Soup of the Day: It's The Great Pumpkin Soup, Queenie Barb!

Although often thought of as a fall season soup, pumpkin soup/bisque is a healthy option for everyone, especially those suffering from severe GI symptoms associated with POTS (ahem...like me.)  Thanks to my sorority alumni sis, Dorean, for sharing this super simple, healthy, and versatile version of a favorite soup of mine!  Give it a try, and let me know what other ingredients you like to add to it. 


Pumpkin Soup:
1 large can unsweetened pumpkin
1 small onion
2 cloves of garlic (minced)
1 large can tomato sauce
1 cup unsweetened coconut milk
1 tsp cumin
1/2 tsp cayenne
salt and pepper to taste (LOTS of salt for the POTS crowd)

Saute onion and garlic in a little grapeseed or olive oil, then mix all the remaining ingredients together in a big pot and heat thoroughly.  It's great on its own, or as a base adding rice, chicken, sausage, steak, black beans and cilantro...well, you get the picture.  Enjoy!

5 Things I Learned From A Marathon

I'm up early this morning!  The weather is perfect in sunny So Cal for the Surf City Marathon and Half Marathon and I'm prepping for the big event.  I've layered my clothes, got my phone by my side, an extra large bottle of Powerade and water with me, had a light snack, and I'm mere minutes away from the start of the half marathon...that I'm not participating in.  But one of my dearest friends is running the half marathon this morning, which means more to me than today's Super Bowl event, because she's running it in my honor!  Just  5 months ago I completed my last half marathon, today I can barely complete a mile due to my disabling relapse.

In the last 8 years, I have completed 3 full marathons, and 4 half marathon.  I've walked every one of them since I've never been able to handle running.   Last year alone in my attempt to will myself back to good health, I walked the LA Marathon in the pouring frigid rain (I have an adversarial relationship with that marathon,) and finished 3 half marathons.  Each of the 3 half marathons I completed with a newbie half marathoner  by my side, including my mom who successfully completed her first ever halfer at the ripe age of 79!  2011 was to be the year I got better, if by shear determination alone, and the marathoning was going to get me there.  I was to complete my last half marathon of the year with my dear friend, Betsy,  in October, as it was her first half marathon attempt ever.  But my health started tanking again, another Mayo Clinic visit was on the horizon, and I hadn't been formally diagnosed with POTS and NCS yet, so there were still several unknowns as to why I couldn't get myself right.  My friend went on to complete her goal, as I watched her from the start line...just another cheering face in the crowd.

It's safe to say that pretty much anyone who completes a half or full marathon can attest to the power of personal accomplishment it gives you when it's over.  It's addicting to most who rise to and complete the challenge. I'm no different, it's been my lifeline, coping tool, and sanity saver since I started long distance walking over the last 20 years.  It teaches you so much about yourself, your capabilities and life in general.  Racing in marathons and half marathons has given me five key lessons that help me get through every day, even when I can barely walk around the block.

        #1 Every Accomplishment Starts With The First Step ~  It's so easy to talk yourself out of trying.  Excuses and over thinking can squash a dream in minutes.  Sucking it up, inhaling a deep breath, and taking that first step is all that's needed to overcome your fears and start conquering your goals.

        #2 Listen To Your Body And Make Adjustments As Needed~ Many of us, including myself, are guilty of ignoring our body's signals.  We either avoid what it's telling us, deny that it's yelling at us to take care of it, or spend too much time being afraid of what it might tell us later.  The truth is, you only know what you know right this moment.  In marathon terms, if you have a blister, you can tend to it at the next aid station.  If you have a cramp, you can massage it and work through the pain.  If you have severe chest pains, you have to stop and evaluate it.  Not every physical crisis is an emergency, but your body is always trying to speak to you.  You are your own expert.  Listen to it and act accordingly. 

      #3 Every Challenge, Great or Small, Can Be Broken Down Into Smaller Pieces To Conquer ~ This is a biggie for me!  No matter what size mountain you are facing, they're all made out of smaller pieces of sand or rocks.  Everything can be broken down into bite size manageable bits.  Sometimes it's easier to look at your feet as you move forward then at the long horizon ahead of you.  I'm practicing this lesson at this very moment. 

      #4 Setbacks Can't Break You If You Just Get Up And Try Again~ Frustration, setbacks, the feeling like you aren't making any progress, are all very real in the marathon training world.  Having faith that your consistency and efforts are ultimately giving you strength and focus in the long run, can take you farther than you may realize.  Everyone falls.  It's those of us that get back up over and over again that accomplish their goals, big and small.  I'm practicing this one a lot lately too! 

      #5 No Matter How Slow You Are, You Can Still Finish If You Don't Lose Focus Of Your Goal~ Impatience and feeling like you're the slowest person around can damage your ego and keep you from attaining what you want.  I have spent the majority of my races in close to last place.  BUT, I ALWAYS end up passing many others who either sprinted off without pacing themselves, didn't train properly, or stopped and didn't bother starting back up again.  I am the tortoise in the marathon world, but you know what?!  I still finish and get the same medal that everyone else gets.  You don't have to be the best to be great, you just have to finish!

While my friend is off running along side the beach in my honor this morning, I'm at home pale and weak typing on my blog, but inspired to stay my course, get out of this horrible POTS slump, one day at a time, one step at a time, no matter how many times I fall, or how long it takes.  I don't have to be the best to be great...I just have to finish!  Go get 'em Betsy girl!!  I am by your side in spirit, dear friend!  Long live the Queenies!!!

And She Lived (blankety blankety blank) Ever After?!?

Oh beloved sweet childhood fairy tales!  You know, the ones that lay out the course of lofty desires for little girls.  The ones that generally kill off the mother (why do they do that?!?!- I'm talking about you, Bambi, Snow White, and Cinderella) and then show young impressionable girlettes what can be yours no matter how smart or stupid you are, even if you're poor.  As long as you are pretty, you too, can find your Prince Charming, get hitched and live "happily ever after" (until you become a mom.)  Good old Disney, et al, are like the Tony Robbins of the little girl realm- pumping up fairy tale minded females with a can do attitude of marriage and happiness for all the days to come.  Whoa!  Back up a second...hey, what did happen exactly to ALL those fairy tale moms who keeled off?  Since their daughters all became princesses, doesn't that kinda make those moms Queenies?  Where are the Queenies in the fairy tales?  Why is it only about the princesses?  WHAT HAPPENED TO MY QUEENIE SISTERS?

To a certain degree, I followed the fairy tale formula.  Had some bumps growing up, got an education, (kept my mom alive, but dad's pretty much AWOL,)  found the prince at a sorority party, married the prince 5 years later, traveled, produced the perfect heir to the thrown (which made me a mother-this will be important later) and 10 years after that, the proverbial shit hit the royal fan!  One day, my life turned on a dime, and I've been desperately trying to get it back ever since.

Oh dear, this is doesn't look good for our Queenie...

I'll spare the gory details, but 3 years later with 3 Mayo Clinic visits and 3 months in a major POTS flare up, that's working on severely disabling me, I'm at the "now what happens?" stage of chronic illness.  I've been spending some serious quality time in this stage since my flare up, set back, relapse, whatever you want to call it.  I've had an unofficial POTS diagnosis since April 2010, but trying to get my estrogen replacement therapy and Hashimoto's thyroid disease balanced properly was the priority at the time, so POTS was put aside until those priorities were better managed.  It took another 17 months to finally add POTS and NCS to my growing list of newfound health issues since my surgical hysterectomy 3 years ago. The tilt table test and neuro-dynamics testing needed to nail down my diagnosis exacerbated my symptoms (understatement) and I've been declining ever since, even while experimenting with the standard POTS treatment protocol.  It gets me thinking, "is this how it all went down for those fairy tale moms?"

My condition(s) aren't fatal, but I still can't help but wonder if my fairy tale is over.  Is this the part of my story where the Queenie Mum no longer gets mentioned cause she's OMG type sick and doesn't get out much?  Or will I have the miracle recovery that will be worthy of a People Magazine cover story or at least inspire a solid Mystery Diagnosis episode?  I'm being brutally honest to tell you that it weighs heavily on me.  Medical specialists at Mayo Clinic tell me my prognosis is good (whatever that means.)  I will likely improve (whatever that means) with time...lots and lots and lots of time.  My age is against me (kinda rude), along with the fact that I have multiple ongoing conditions like surgical menopause, Hashimoto's disease, and psoriasis.  But the fact that I did gain some ground the year before is a good indicator that I can and will come out of this physical slump.  I'm hopeful, but I also feel physically tortured and exhausted every single day now.  I don't drive much, it's a major feat to get dressed, it's difficult to concentrate on even the simplest tasks, and exercise is getting harder and harder.  I'm weakened, but my will and spirit is not broken.  I still believe that my fairy tale will have a happy ending.  I will regain my strength, stabilize my health, renew my spirit, and emerge from this crisis the Queenie I was born to be.  How do I know this for sure?  Simple. I still have my heroic prince, my shining heir, a supportive royal court of family and friends, even MY Queenie mom is still here by my side (take THAT fairy tale mommy killers!!)  And deep within my being, I still have the mighty armor that protects me in my darkest hours, every day, every step of the way..I still have hope!

Soup of the Day

Soup's on!  Actually, soup's been on for like 10 weeks for me personally, mostly the canned variety.  My POTS symptoms have struck my digestive track hard the last 3 months, slowly whittling my diet down to mostly soft and easy to digest foods.  This is a problem.  This is a BIG problem!   When I eat, the body senses the need to digest the food (that's normal) sending my autonomic nervous system (ANS) into overdrive causing dizziness, increased heart rate, higher blood pressure, facial and neck flushing, light headedness, and eventually an uncontrollable need to pass out until the digestion process is complete (which is decidedly NOT normal.)  In order to survive this process, my intake levels have gone way down and I've naturally navigated to the foods that take 1-2 hours to digest instead of 4-6 hours.  BUT,  I still get hungry, which makes me frustrated, which makes me grumpy, which makes meal time a very sad redundant part of the day for me.  I have eaten more cans of soup the last several weeks than I've probably consumed over the course of my life.  I like soup and all, but it's getting really old lately.  So what's a chronically sick, increasingly weak and frustrated Queenie to do?!  Why post about it on Facebook and blog about it, of course!!

This weekend I posted about my soup rut requesting new suggestions for soup ideas.  I got some amazing responses. Suggestions on restaurants with the best soups, offers to bring me some homemade soups, and lots of great soup recipes from my talented family and friends.  All the sudden I'm swimming in soup!  I've decided to post these soup recipes (with permission) in a special section on this blog because you don't have to be sick to enjoy soup!  Here's why:

• It's easy to add extra salt too (a POTSy must)
• It's a great way to add extra veggies and fiber
• It's comforting
• It's fluid based (another POTSy must)
• It's flavorful and diversified
• It's simple and often quick to make
• It's often diet friendly

Ok, that's about all the soup cheer leading I can handle.  I've had a lot of soup the last several weeks and I could really use a steak or something.  But that's off point, the real focus here is easy, simple, yet flavorful soup recipes generously shared for all of us to enjoy!  I might not be able to add a new recipe every day because my concentration levels, dizziness and brain fog are at an all time high, but I'll still be eating soup every day until I stabilize and I appreciate those who have shared their favorite recipes to help see me thru this bad flare up.  I'd love to share your favorite soup recipes too!  Please feel free to message me with your family favorites or leave them in the comments section.  Soup's on in the Queeniedom!

I Suck At This!

I've been in a major "flare up" with my POTS symptoms now for 3 solid months.  I also just rounded the corner to my 3rd year anniversary of health hell, and I've come to know one thing for sure about myself:  I suck at this!

I know what most of you are thinking:  "Oh Queenie!  But you're so talented, and beautiful, and fun, and talented, and frankly just knock down gorgeous, and incredibly super intelligent, and shockingly talented, and witty, and an all around great person who doesn't suck at anything you do!"  Which is all normally spot on accurate (please tell me I haven't lost my heavy sense of sarcasm here,) but the truth is:  I really suck at this!

Let's face it, I'm a terrible sick person.  Case in point #1:  I don't look sick.  Everyone knows that you don't have to look sick on the outside to be a raging health mess on the inside, but I just don't pull this off well.  I try to give my best tortured eyes look when I can to express the depth of hell my body is going thru every single day, but I'm just not good at it.  Most people who see me would think I'm a healthy 40-something year old woman who maybe just isn't getting enough sleep.  They wouldn't possibly know that sitting or standing upright, while trying to exercise, or shop, or cook a meal, or stand in a line, is akin to being hung upside down by your ankles for days on end.  How could anyone possibly know that I haven't eaten a real meal since Christmas Eve, which was an epic fail, because every time I eat it's like I've been shot by a horse tranquilizer dart.  I have roughly 15 minutes to get myself to a safe place to literally crash and pass out cold until the food is fully digested, which can last anywhere from 2 to 6 hours.  This has been going on for weeks, landing me on a mostly liquid diet, but I don't look that sick because the weight I'm losing is replaced with the water I'm retaining to keep my blood volume up.  It's torture and it's every single day.  I'm hungry and dizzy and weak, but I don't look sick.  Friends who see me think I'm doing ok, the medications and treatment protocol must be helping by now, cause I don't look that sick.  Even when I look in the mirror sometimes, I can almost fool myself into believing that I'm not that bad off...and then I try and get dressed... another act of torture.

But that's just the beginning of my case!  Case in point #2- I'm an impatient patient!   After 3 years of this awful roller coaster, you start to learn a thing or two about the medical system, and one thing I know is that I'm a horrible patient. Sure, I follow doctor's orders, I research my condition, I'm willing to experiment with new treatment protocols, I'm organized with my medical information and files, but I've come to find out that's not REALLY what many doctors are looking for in star patients.  Most doctors (with the exception of my Mayo team) are looking for docile, unquestioning, medicated drones for patients.  The business of medicine is at an all time high, and stats rule the whole industry, meaning those patients that fall within the general treatable framework and can maintain the pharmacological industries (both synthetic and biodentical/natural) win!  And I SUCK at that!!  Trust me, I would love to find my magic pill that would carry me over to the promised land of improved health, but POTS doesn't really work like that.  As of now, it's not a big money making illness, so that makes it hard for many doctors to stay educated on it, and interested in it, other diseases have a much higher profit margin and success rate.  So hard as I've tried, I'm really an impatient patient,and consequently, many in the medical field are uninterested in me.  I suck at that!

Then there's always case in point #3-  I suck at being care taken.  Now, in my defense, I'm used to being the doer and care taker.  It's specifically been my job the last 13 years and I was just getting really good at it!  I was totally in the groove of being a stay at home wife and mother to my loving husband and son, PTA, soccer mom, MOM's Club, parties, socializing, always on the go and always knowing what needed to be done days before it was even a thought for anyone else.  I was proud of my job.  I love my job!  But now things are different.  My husband has to step up and work overtime doing his job AND mine.  My 12 year old son comes into the bedroom multiple times a day to make sure I'm ok.  I'm lucky to have them.  I'm not complaining about that, I just suck at being so weak and unable to do the things I love.  I struggle every day to come to terms with not being the person I was, mourning the loss of the woman I had spent 37 years creating and cultivating before I became so sick.  Sure, I'm still me deep at the core, but so much of what I purposely developed to be me is no longer within my control.  It is a very stripped and vulnerable position to be in, and while I love my guys more than anything in the world, I hate being their burden...I suck at that!!!

But the worst of it has to be Case in point #4- I suck at the unknown.  And I mean, I seriously suck at the unknown.  I'm a planner.  I'm goal oriented.  I'm driven.  I'm a doer.  I'm a problem solver.  Just ask anyone that knows me. I'm decidedly NOT the "hang around and see how this all works out" kinda gal.  I SUCK AT THAT!  I try to keep distracted, but my body doesn't cooperate well.  Walking, going out to lunch with friends, date time with the hubby, family time, playing with the dog, even writing (it's taken me 3 weeks to work up the mental focus and energy to write this,) are all things I use to cope with stress and trauma, but my body often won't cooperate and let me use these tools.  I can't find the rhythm of my new life.  I can't lean on what I normally do to help myself.  Doctors and friends are running out of advice, because who has this?  I'm the only one I know who does. The medical facility that has the latest info is in a whole other state and there's little that's really known about this condition.  It manifests itself differently for almost every patient, making it a very personal condition and making me the only expert of my own illness.  I'm no medical expert! I suck at that!  How do I make it better when the treatment is so slow to take effect and/or just doesn't work?  Mayo says I'll get better...probably...maybe...likely, but that's not good enough for me.  I want to know how, when, why, and what can I do in the meantime.  Again, don't get me wrong, I strive every day to get used to a new normal, work on new treatment options and ideas, write when I can to help keep the stress down, walk when I can to keep my head clear, but it still doesn't take away from the fact that I suck at this!

Sometimes when I'm super frustrated and flat on my back staring at the ceiling,  I fantasize that Donald Trump will stroll thru my bedroom door with his freakishly disturbing  hair style and walk right up to me with those creepy pouty lips of his and say "Queenie, we thought you'd do a better job with this illness thing.  We had a lot of hopes for you.  You looked a lot stronger than you proved to be and frankly, you've been a huge disappointment.  Queenie, it's over, YOU'RE FIRED!"  And then I'd walk out of my bedroom door, feeling like a million bucks, and resume my life. I'd be great at that.

My Life Went to POTS

 

 

Do you remember a few years back the big recall that happened with Toyota/Lexus vehicles? You know, the  scandal that some of their cars were careening off on their own causing dangerous and sometime deadly havoc on the roads leaving helpless drivers unable to control the gas and breaking function.  There was a big investigation, Toyota denied any wrong doing, and the exact problem was a little sketchy because the problem was inconsistent.  Sometimes the vehicle worked fine, and sometimes it just slammed on the gas with no way of controlling or stopping it.  I remember thinking how truly terrifying that experience would be.  Now imagine your body did that and you have the beginning glimpses of what it's like to have Postural Orthostatic Tachycardia Syndrome (POTS) 

It's helped me so much to have a diagnosis of a condition that has haunted me since my 2009 hysterectomy.  My health has plummeted out of control since then and doctor after doctor, test after test, couldn't explain why until recently.  Mayo Clinic explains that  POTS is a extremely rare condition, only 500,000 cases diagnosed in the US, which occurs when the autonomic nervous system (the involuntary or automatic part) doesn't work as it should. The autonomic nervous system, made up of the sympathetic division (the accelerator) and the parasympathetic division (the brakes) controls most of the vital body functions like heart rate, blood pressure, digestion, bowel and bladder function and POTS is a collection of chronic symptoms that occur from this malfunction.  Symptoms often include tachycardia (rapid heart rate), chest pain, light-headedness, brain fog, skin rashes, dizziness, fainting, tingling/electrical sensations, shortness of breath, vision changes, vision loss, excercise intolerance, fatigue, headache, migraine, nausea, bowel irritability, bloating, sleep problems, heat/cold intolerance, excessive sweating, clamminess.  I have had all of those, except for vision loss. It affects mostly young females and is thought to be caused by chemical imbalances in the nerves controlling blood flow.  Viral infections, trauma, surgery, pregnancy, are all possible triggers.  In about half the cases, the cause is unknown.  Treatment is individualized because every POTS patient is different, and is focused on symptom management. There is no cure but roughly 50% of POTS patients recover to a good functioning state.  Many exhibit a relapse/remit format for the condition.  It is often disabling and extremely challenging.

So that's the clinical explanation.  Here's what it's really like to live with POTS:

Every day is uncertain.  You wake up to a disproportionate rush of adrenaline.  Your heart starts racing but you think it might be an ok day (not great) because you can actually move rather than feeling locked to your bed. You think maybe you can get some long overdo chores done so you get up and then your heart races, increasing 30bpm or more, turning your upright position into an instant sprinting condition, according to your heart function.  It's ok, happens all the time, just get dressed maybe take a shower and see how you feel then. You have to watch the temperature in the shower as heat exacerbates your condition.  A simple shower feels like a 5k race.  Get out and the blood is starting to pool in your abdomen (and/or legs) and  likely starting to change color from it.  Your brain is screaming for your body to pull the blood back up to it, so your heart pumps faster trying to accomodate.  Your face is flushing, you start sweating profusely and you probably haven't even dressed yet.  Maybe your spouse, your parent, your child sees you in this distress and they start to fear for your safety.  It's ok, it happens all the time.  It won't kill you.  You start thinking maybe that trip to the grocery store won't happen, maybe that load of laundry will have to wait because an overwhelming need to lay down (not necessarily just sit) overcomes you. Why?  Because if you don't you know you will eventually start shaking uncontrollably, the electrical pulsations will storm, you'll have disrupted vision, be unable to focus, have difficulty speaking, your bowels or bladder will cease up or just release and eventually you will faint.  Maybe you push through it anyway, gut your way to accomplish something in your day, while your mind constantly evaluates and negotiates with your body.  Maybe you actually accomplish what you spent months or days contemplating and talking yourself into doing because it is simply that challenging to work with an out of control body.  If you do, you pay for it. You are sick and bed ridden for days, sometimes weeks afterwards.  Then you start again from scratch.  Building yourself back up hour by hour to accomplish another task in the future, maybe a few hours from now, maybe a few days from now, maybe a few months.  It is a slow condition to work with.  You don't just bounce back. You work and gut and claw your way back to normal, never quite reaching it.

Maybe tomorrow will be better.  Maybe it will be worse. And in the meantime, you put a smile on your face and you pretend like you are ok enough and fight to hold on to the person you are deep inside while simultaneously mourning the loss of what you used to be able to do with ease.   A constant battle inside a broken body.   And that's how my life went to POTS.   

Are You There Blog? It's me, Barbara...

Six months.  Almost to the day.  It's been 6 months since I last posted on my beloved little blog.  Why?!  I've been asking myself that a lot the last few weeks.  Why did I just stop writing?  Something that was bringing me so much pleasure and was so cathartic in my healing.  I just dropped it like a dead weight, never to return again for six long months.  Why?!  Why am I just now revisiting it?  Picking it back up like a long lost teddy bear, turning back to it after all these months of neglect.  Why?!  Because I need it...

I've been thrown for physical loop, and I've tried for a long time to just ignore it.  Mind over matter.  Go about my business.  I'm ok.  A jedi mind trick of epically failing proportions.  Just because dozens of doctors missed it, and couldn't see it, doesn't mean it doesn't exist.  I am sick.  I've said that for almost 3 years.  I am not well. Something isn't right.  My body doesn't work like this.  What's wrong with me?  And I took it out on my blog.  If I stop writing about it, I take away it's power.  If I ignore it, it will just go away.  I was lying to myself...

So now I know.  Now I have a diagnosis (POTS and NMS and Hashimoto's Thyroiditis) and all the nasty honesty that goes along with it.  Some good news (I'm not dying,) some not so good news (I'm being regularly tortured by my own body,) and lots of uncertainty (very rare, recently researched, no cure, lots of hit and miss treatments.)

So where do I turn to?!?  My blog.  Because Judy Blume didn't write a book about me and dysautonomia, the utter breakdown of my autonomic nervous system.  So many questions.  So much stress.  So many unknowns.  So very scared about what this really means for the rest of my life.  The overwhelming impact it has on my poor husband and my young child, not to mention the rest of my family and friends.  I should reach out.  I need to reach out!

So here I am again.  Are you there, blog?  It's me, Barbara, and I need you now...