Beware...Be Aware!

October is turning into a busy health awareness month.  Not only is this the highly publicized and marketed Breast Cancer Awareness Month, but it is also the launch of Global Dysautonomia Awareness Month.  Not to be outdone, Epilepsy Awareness Month is awaiting in the wings for November.  Yes indeed, busy times to be aware of some very serious, life altering health issues.

Did you know, according to the Centers for Disease Control and Prevention, that nearly 50% of Americans live with a chronic disease and that 7 of the 10 leading causes of death in the United States are chronic diseases?  Staggering, right?!?!  I mean, WOW!  With so many of us suffering, or at least knowing someone who suffers from a chronic condition, why aren't we all more aware?  Why don't more of us do anything and everything we can to prevent or at least get early detection for these conditions?  I'm going to go out on a limb and name one big culprit...denial!

"It can't happen to me."  "I'm doing enough to stay healthy."  "I'm not old enough to get that ."  "Mystery Diagnosis is just a tv show talking about someone else's weird health issue."  "I exercise so I'm good."  "Doctors will know how to best treat me."  These are the excuses I used to tell myself while awareness campaigns raged on, while I'd buy my pink swag to support a cause that was remotely related to me, and Mayo was just something I put on my sandwiches (sparingly cause I was a healthy kinda gal.)  I thought I was aware of my family's health risks and knew what health conditions I could expect in the future...the way far old age future.  But I was wrong.  And I was not aware.

My sister Malinda, who's 9 years older than I, started having an odd rash on one of her breasts 4 years ago.  Within 3-4 months of her rash appearance, I came on with a sudden and excruciating bout of lower abdominal pain and swelling that wouldn't go away.  In my sister's case, her rash continued to develop and she was told it was mastitis and ointments will make it go away.  In my case, I was told I had endometriosis and the most effective and permanent cure was a complete hysterectomy and it will go away.  My sister passed away from Inflammatory Breast Cancer approximately 18 months later, and my hysterectomy has touched off an army of chronic conditions that only seem to be growing in number to this day. We were not aware.

I'm willing to guess that most people are only aware of long term health issues once they or someone they know and care about faces them.  I thought I knew all about breast cancer because it runs in my family, but it turns out there was still lots to learn.  I, and most of my doctors, couldn't tell you what dysautonomia or POTS or MCAS was before I had to battle it myself.  So what does awareness mean?  Does it mean you have to be a walking encyclopedia of medical knowledge at all times?  Does it mean you should live your life in fear of contracting a terrible health condition?  I've really been pondering this for awhile. What did I wish I was "aware" of before I got so sick?  What do I wish I would have understood better, and taken to heart in my pre-POTS days?  This is what I came up with...

• Got a health issue that runs in the family?  Don't just buy the swag and gear, take time to learn the facts...they may save you or someone you love's life one day. For most chronic or life threatening conditions, early detection is key!
• Don't waste time with people who are negative and/or don't bring positive into your life.  They will be the first to leave when you are sick.
• Doctors know a lot less than you think.  Their diagnosis and treatment plans are based on their educated opinions and statistics.  ALWAYS GET A SECOND OPINON!!  ALWAYS!!
• You can't plan and control everything in your life.  Be willing to be flexible, it will save you a lot of frustration and stress.
• Somebody has to be that person on Mystery Diagnosis.  That someone can even be you.
• Many of the thoughtful things you do for others, they will do for you when you need it most. Keep up the good kharma.
• The majority of what you think is important in any given day, is utterly unimportant when you are sick.  Try to focus on what makes your life meaningful every day, let the rest fade away.
• Healthy people get terrible illnesses too.  But your healthy habits will be very helpful when you are fighting a devious condition. 
• Slow down!! Listen to your mom, and take time to smell the roses.
• Don't wait till later to work on that Bucket List!  Take that extra step to do something adventurous early and often, those memories will be comforting to you on the days you can't leave your bed.
• Always listen to your body...it speaks to you!  If something doesn't seem right, keep fighting for accurate answers.  Never give up on yourself!  Never surrender to what the medical profession tells you if you are not convinced it is not right, accurate, and thorough.  You deserve to always be treated with compassion, quality care, and respect!

I have few regrets looking back on my life to this point.  The one thing I will always silently punish myself for and regret is that I never got a second opinion before my hysterectomy.  I was in so much pain at the time, and put so much trust in a doctor that I didn't whole heartily believe in, and who's compassion was utterly lacking.  I was blind and arrogant to how quickly poor health can enter your life.  Whether you are the poster child of health, struggling to find a diagnosis, or battling for your life, you deserve compassion and competent care from your medical team.  I wish I was more aware of that when I was healthier. 



 

Visible Hope: How One Celeb Filled Glam Night Out Brought Me Visible Hope

Karina Smirnoff (Dancing with the Stars), Queenie Barb (wife, mom, and chronically ill) , and Quinton Aaron (The Blind Side) just, ya know, hanging out on a Thursday

Last night, Lupus LA held their 4th Annual Get Lucky for Lupus LA Celebrity Poker Tournament Fundraiser.  So, what does that have to do with me?  Well, I happened to come across a Groupon a couple of days before to attend the celebrity filled event.  The first thing that popped in my head was "Cool!  Getting dressed up, hob nobbing with celebs, food, drinks, and fantastic people watching for a great cause...I'm in!"

Then the doubts flooded in.  It's too far away.  It's a school/work night.  What if you can't handle the drive?  What if you pass out while your there?  What if something happens to your son...or the dog?  You don't even have lupus.  Why would you make such an effort to get out when it's so hard?  What would you wear? How are you going to convince the hubby to go?  And that's just the top Top 10 list.  Two days!  I spent two days analyzing, re-analyzing, and questioning myself about grabbing that ticket and just going for it.  I couldn't understand why I wouldn't just let it go and give up.  I mean, who would know differently, and who really cares anyway? Then, it hit me like a bright ray of light...I would know.  And I care.

I have tested myself to push beyond my perceived limits most of my life.  When others tell me no, I take it as a personal challenge to prove otherwise.  Pushing for an accurate diagnosis and effective treatment is a prime example of this will to overcome what others tell me can't be done. But there's other ways I've pressed beyond the likely and probable to achieve more than is expected and push beyond the limitations that are now firmly planted in my body.  I completed the LA Marathon in the down pouring frigid rain last year, alone.  I modeled for a girlfriend's jewelry line in Hollywood.  I flash mobbed for some very worthy causes. All while ill with dysautonomia and autoimmune disease.  I've pushed hard at key moments in my journey with my illnesses.  Why?  Why do I do it?!?  Because it brings me hope.

Every time an idea or opportunity comes up that most would normally blow off, or think is too hard, or impossible, I look deep down inside and think "maybe...just try," and the fever to accomplish and overcome is relit brighter than ever and hope firmly sets place once again deep inside me.  It's how I get through the overwhelming challenges that I've stumbled into these last several years without completely losing my mind. Hope challenges me every time to face the often loud obnoxious voice in my head that tells me "no," "impossible," "it's a waste of time," "why?!" and replaces it with a softer, but just as firm reply of "yes," "possible," "you can do it!"  Hope.  It's what I thought I was losing this summer while I suffered a decline as my son was battling seizures and seeking an accurate epilepsy diagnosis.  The inner voice of defeat was so strong this summer, but hope was stronger. Hope means the story is not over, and what seems unlikely or unrealistic or insurmountable can be achieved. 

So as the clock ticked down to decision time, I gave into hope instead of doubt and fear and judgement, and bought the tickets for that event.  And you know what...my patient and handsome hubby and I got dressed up, drove too far out of our way, stood on my feet way too long, talked to people we didn't know to support a cause that doesn't effect us...and had a fabulous celeb filled date night out!  I'm still glowing and am always grateful for every day that I have hope!

So this is what visible hope looks like to me...

LA Marathon 2011- Year 2 of my Health Hell Journey

Flash Mobbing for Buddy Holly's Hollywood Star Ceremony- Year 2

My stab at modeling in my 40's- Year 2

The Queenie & Gilles Marini (Dancing with the Stars)-Year 3

Oh yeah, and there was Lou Diamond Phillips

My Hero, My Husband Paul

Diagnose Me...Maybe?!?!

Blogging for Invisible Illness Awareness Week continues and I'm  in a super silly mood.  The road to diagnosis is irritating, long and redundant, kinda like that Carly Rae Jepsen song, "Call Me, Maybe". I got inspired to swap the lyrics out of the song, but I'll spare you the horror that is my singing voice.  Dedicated to anyone that's struggled or fighting to find an accurate diagnosis, I give you "Diagnose Me...Maybe?!?"  Feel free to share and belt it out loud at your next doctor appointment!

I threw a wish in the well,

Just ask me, I'm happy to tell,

Truth is I feel like hell,

And you're my specialist to-day! 

I'd trade my soul for my wish,

Medical bills and still no hint,

I wasn't looking for this,

But you're my doctor to-day.

You're looking bored and rushin',

I 'm dizzy and I 'm flushin',

Hot sweats, mind is foggin',

Where you think you're going, anyway?!

Hey, I just met you,

And this is crazy,

But here's my symptoms,

So diagnose me, maybe?

It's hard to sit up,

Can't speak clearly lately,

But these are my symptoms,

So diagnose me, maybe?

Hey, I just met you,

And this is crazy,

But you're my specialist,

So can't you diagnose me, maybe?

You didn't take your time here at all,

I said it takes no time then I fall,

You can't think of nothing at all?!?
But you still need my co-pay.

I beg, I moan and I squeal,

Can't you help me, this is real!

I told you exactly what I feel,

Can't you consult with a peer any-way?

Your stare was glazin',

And you were awkward pacin',

Crap, now my heart is racin',

Where ya think you're goin' anyway?! 

HEY! I just met you,

And this is crazy,

But these are my symptoms,

So diagnose me, maybe?

I've already seen like

14 doc-tors lately,

But these symptoms are sucky,

So diagnose me, maybe?

Hey, I just me you,

And no I'm not crazy,

But you're the specialist,

So diagnose me, maybe?

And all the other docs

Try to placate me,

But here's my symptoms,
Can't you Google this s@&t, maybe??!?

A Thank You Note For My Guys...

I am beyond fortunate to live with two of the best supporters in the world, my husband and my son...my guys!  Day in and day out, they have both been the ones to witness and react to the ever changing and often scary effects that my illnesses inflict on my body. It's hardly a week that goes by without my husband having to work from home, call in sick, or try to figure out on the fly if this is now the moment where we once again trot off to the ER for a pointless round of "gee we don't know what to do for her."  My son has urgently brought me gatorades and salt shakers, without being asked, just because he's seen the scenario of my rapid declines into syncope over and over and over again.  No matter how hard I try to rally, my body and these illnesses remind me that I am no longer in control and free will is not so free anymore.  Even the beagle, my unofficial third guy, has watched me with a look of concern more times than I can count over the last several years, laying his head down by my hands when we're alone to let me know he's on guard.  These guys are my day to day support system, they are my lifeline, and they are the main reason I carry hope so strongly.  I want to have better days not just for myself, but for them as well...they deserve every inch of fight I have within me.

I thank them daily, but given that it's Invisible Illness Awareness Week, I thought now would be the perfect time to thank them publicly.  You see, their roles are invisible too. They are part of the silent army of caretakers that help take on extra duties and expanded roles to help the ones they love get through the hardest of days.  It is a very difficult position to be in to watch someone you love suffer or struggle and not know exactly what to do to fix it, rolling with the punches one day at a time, moment by moment.  So for my guys, this note is for you....
 My Dearest Guys~

Two simple words that carry the entire meaning in my heart: thank you!  Thank you for working extra hard at school and at work.  Thank you for carrying me into my bed when I pass out in the car over and over and over again.  Thank you for making dinner, for picking up prescriptions, for helping me keep our home tidy.  Thank you for not judging me when I can't seem to get out of bed.  Thank you for loving me, when I seem a shell of my former self.  Thank you for inspiring me to want to fight my physical battles each and every day.  Thank you for holding me when I can't seem to stop crying.  Thank you for making me laugh and smile, on the good days and the bad. Thank you for all you sacrifice each and every day for the sake of our lil family.  Thank you for not blaming me for all that my illnesses have taken away from us.  And thank you...thank you from the bottom of my soul for waking up each morning with hope in your hearts knowing that nothing lasts forever and every day is a blessing because we have each other.

I love you always~
Your Queenie



Today marks the 11th anniversary of 9/11 and I just wanted to tell my guys thank you. Today is a blessing, and so are they! 

Invisible Illness Awareness Week: 30 ThingsAbout My Invisible Illness You May Not Know

 

Today kicks off Invisible Illness Awareness Week at invisibleillnessweek.com, a time to come together as a chronically ill online community to help raise awareness for the plethora of invisible illnesses and conditions that plague so many of us these days.  I've been a particularly vocal communicator of my battle and journey with my growing list of chronic conditions, but so many others suffer in silence feeling the harsh isolation, loneliness, and utter helplessness that accompanies the majority of invisible illnesses.  So, to all of those who suffer silently, or speak vocally, to all those who just don't know or understand exactly how invisible illness affects a person and their family and friends, this week is dedicated to you!  To kick it off, here's 30 things you may not know about my invisible illness...

1. The illness I live with is: NCS (Neurally Mediated Syncope,)  Hyperadrenergenic POTS (Postural Orthostatic Tachycardia Syndrome), Hashimoto's Disease, Psoriasis, Surgical Menopause (ok, that's not an illness, it's just feels like one sometimes), and now MCAS (Mast Cell Activation Syndrome)

2. I was diagnosed with it in the year: Well, it's been a cascading effect, with every year bringing on more and more diagnosed conditions, starting in 2009 with my surgical hysterectomy.  I was officially diagnosed with POTS at Mayo Clinic fall of 2011, Hashimoto's Disease was diagnosed in 2010, MCAS currently being diagnosed.

3. But I had symptoms since: My first major symptoms presented as endometriosis in January of 2009.  Looking back however, I believe I've had several bouts of dysautonomia and/or MCAS events throughout my lifetime since I was a teenager.

4. The biggest adjustment I’ve had to make is: Constantly adjusting. I hate it. I'm a planner and the utter chaos of my health conditions drives me nuts.  No two days are ever the same.

5. Most people assume: For awhile that I was ok,  because I didn't look sick.  Now I think most people assume that I'm struggling to get on top of my health because I've been so vocal about my journey.

6. The hardest part about mornings are: Not knowing what kind of day I'll be facing.  Is it a "walk and get a couple of things done" kinda day or a "my bed is my best friend and so is the TLC channel" kinda day.

7. My favorite medical TV show is: Breaking Bad and Mystery Diagnosis

8. A gadget I couldn’t live without is: My iPhone. It's my lifeline and connects me via text or facebook to friends and online support when I can barely move or think.

9. The hardest part about nights are: Sometimes sleeping, but usually reflection.  It's at night that I look back on my day and more often than not lament over the lack of accomplishment. The mornings are hopeful, the evenings are reality.

10. Each day I take _ pills & vitamins. (No comments, please) Well, it used to be 3, but I'm on week #2 of trying a MCAS treatment protocol so that's got me currently at 16 pills/vials a day.

11. Regarding alternative treatments I:  Have tried a few, particularly for menopause and nothing has helped. I'm open minded(ish), but want to exhaust all traditional medicine first.

12. If I had to choose between an invisible illness or visible I would choose:  While a visible illness would make it easier for others to understand, an invisible illness gives me the option to "fake it" when I want to. In other words, there are some days that I try really hard to slap on makeup and put on a happy face because I'm just sick and tired of being sick and tired.  When I pull it off successfully, I'm glad that my illness is invisible.

13. Regarding working and career:  My work for the last 13 years has been CEO of my household and raising my son.  I am FAR below my capacity to do my job to my satisfaction.  My husband has had to pull many, many hours of double duty.

14. People would be surprised to know: How afraid I really am. The future holds so many question marks, it's scary.

15. The hardest thing to accept about my new reality has been:  The utter and complete lack of control over my own body. 

16. Something I never thought I could do with my illness that I did was: Complete the LA Marathon in 2011, in the pouring rain, uphill both ways (ok, I'm exaggerating that last part).  Before I was officially diagnosed with POTS, I had a whole mind over matter attack and wanted to get back to my marathon days.  I completed it, but it still didn't change my health situation.

17. The commercials about my illness: Would be amazing if they existed!

18. Something I really miss doing since I was diagnosed is: Being active.  I push myself to walk when I can, but I really miss doing stuff when I feel like it and walking as my main coping tool.  Now, it's just an activity I push through.

19. It was really hard to have to give up: Volunteering.  While I still do what I can, I dearly miss volunteering at my son's school, and other places when I feel like it.  I'm trying to get that back, but since no two days are the same, it's hard to commit to volunteer.

20. A new hobby I have taken up since my diagnosis is: Blogging!  I love it, when I can concentrate long enough to pump out something coherent.

21. If I could have one day of feeling normal again I would: Travel somewhere with my guys.  I really miss vacations that don't include a stop at Mayo Clinic.

22. My illness has taught me: Patience and a certain amount of faith that things will work out the way they're supposed to. 

23. Want to know a secret? One thing people say that gets under my skin is: Have you tried <blank>?!? While I appreciate where the suggestions come from, I've lived with this body and these conditions for years now...trust me, I've tried and researched most things you can suggest.

24. But I love it when people: Just act out of compassion.  Bring an unplanned meal, send a card, text me randomly, invite our family over even if we can't make it.  I am fortunate to have many loving, caring and supportive friends and family.

25. My favorite motto, scripture, quote that gets me through tough times is: Never Give Up!  Never Surrender!! and lately Power to the POTSies!!

26. When someone is diagnosed I’d like to tell them: Take a deep breath and dig down deep for your patience...treatment and stability is a very long and trying road but it is VERY possible!

27. Something that has surprised me about living with an illness is:  It's brought me and my guys (my hubby and kiddo) closer.  We've been forced to strip down to the bare basics in so many ways and that means leaning on each other more. 

28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me.  It is so lonely being chronically ill every single day.  It's appreciated when someone takes the time to just listen.

29. I’m involved with Invisible Illness Week because:  Speaking out is a way to make the invisible visible. If you don't explain your struggle, how can you expect others to understand?

30. The fact that you read this list makes me feel:  Happy.  Thank you for listening to me!

But You Don't Look Sick...

I think for the majority of people stricken with an invisible chronic illness, one of the things they hate to hear the most from the "healthy" peeps is, "But you don't look sick!"  It seems to be a major bone of contention to many people, like myself, who negotiate every minute of every day, awake and asleep, with a body fraught with pain, inflammation, confusion, and chaos.  Most who become indignant at others who simply don't see the suffering, are just wanting some validation for the long and lonely war they are forging with their body day in and day out.  I, personally, have never been highly offended by a friend, stranger, loved one, doctor (ok, maybe I get offended by the doctors) who try to tell me my outward shell is holding up pretty good.  I understand most of them are just trying to find some words of comfort and encouragement to someone facing an unexplainable battle that they haven't lived themselves.

My point?  My point is that I see both sides of the fence.  After deciding to put on make up, or just roll out of bed and get out in the sunshine, I appreciate knowing that others don't think I look like the death warmed up version of myself that I almost always feel at any given moment.  I also have had many times when I feel like I can barely keep it together, despite my best efforts, so a simple "Hey, you don't look so bad" often leaves me feeling like "Gee, thanks!  Could you minimize my illness any more?"  Two valid sides of one simple statement but how do you get to the mutually respectable meeting place?  Well, I think Team No One Understands My Illness is doing a great job at express how much this statement is unfavored in the chronically ill world.  It ranks tops on many "Don't Tell Me This Shit" lists that permeate blogs, websites, and even tshirts.  I relate...I totally do...I ain't gonna lie.  BUT, sometimes there's another way to look at things.  Sometimes, exposing yourself and your weaknesses brings about better compassion and understanding to what is so many times a scary and difficult condition for others to understand.  Here's what I mean...

I have menoPOTS, a self proclaimed term combining my surgical menopause with hyperadrenergenic Postural Orthostatic Tachycardia Syndrome.  I also have, Hashimoto's thyroid disease, neurally mediated syncope (NCS), psoriasis, GERD and all the rest that comes with these crappy conditions.  I am very sick.  I am healthier than some with POTS, but definitely not as well as some.  I have been suffering for over 3 years now and work between 30-60% of my former capacity.  Mostly, I'm around 45% of my previous capabilities.  I look great when I go out, if I do say so myself.  But I also look sick.  The above picture is me right after I passed out from walking 1/2 a mile outside today.  I look like I have the flu.  I spend most of the time looking like that.  When I don't, it means I worked hard to hide the bags, dark circles, skin rashes, bruises, and blood pooling that often accompany my body these days.

Instead of being upset, I welcome those telling me "But you don't look sick!" That's because I've changed my attitude about it awhile ago. I'm an open book and explain my condition to anyone who will listen or read about it.  I work hard to own the conditions I have without submitting completely to them defining who I am.  I struggle constantly with all of the above, but now when people tell me I don't look sick, I often reply with one of the following:

• Thanks!  This is my first day out in 2 weeks!
• Well that's good! I almost fainted in the shower so I'm glad it doesn't show!
• Thank you!  If I could only feel that way I'd be stoked!
• I don't look like an Olympic sprinter either, but I can't seem to get my heart rate to understand that!
• Thanks! That's because I spent 6 hours getting ready.  I'm glad it's paid off!
• Awesome! I'm glad you haven't noticed my beet red hands and feet yet!

And when I come home, or feel really low, or defeated, or overwhelmed, or exhausted, I open up the laptop and I blog and attempt to educate about my illnesses.  If we, as a chronically ill community, do not positively educate, then how do we expect anyone else to know and understand what it's like to suffer in silence?   Especially in a healthy looking body.

The Art of Being Sick or Everything I Learned About Being Sick I Learned From Being Chronically Ill

There are many moments of deja vu I've experienced since being chronically ill. A certain "hey, haven't I done this before or experienced this already or explained this previously" feeling that overcomes me when I'm getting ready to plant myself squarely on Step 1...again.  I'm at that point now.  It's surreal.  No matter what doctor I talk to, what medication I try, what lab test I undergo, I still always seem to eventually end up at the same spot, leaving more questions than answers and wondering what my next step should be.  After a long loop of more Mayo testing, discoveries, medications, mysteries, and ER visits, I'm back at that horrible Step 1 again.  I'm learning the hard way about being sick and dealing with all the stresses and strains that go along with a chronic illness.  It's an art to carry on this way and still keep "you" in tact.  I've learned much along the way and thought I'd share it now, if only to reinforce those hard gained lessons to myself.  Without further ado, I present the Art of Being Sick...

                  Try ~ It's always easy the first time around to try something new.  The excitement, the thrill, the hope and expectation that trying a new med, a new approach, a new exercise, a new doctor will bring about the help your body desperately needs.  It's not easy to try something new when you've spent years trying to fix the same condition and feel like you've exhausted every possible hope of relief.  But that simply isn't true.  There's always a new approach, experience, doctor, even medication.  Don't give up. Try!

               Stop Trying ~ This is why being sick is an art.  Sometimes you need to stop trying.  The act of what feels like beating your head against a brick wall is often not only physically, but mentally exhausting.  Your brain and will power can't always run nonstop without a break.  So, stop trying for awhile. Give yourself and your support system a break.  You NEED the break!  Stop trying occasionally, but don't ever give up!

             Teach & Talk ~ Being sick, especially with a long term chronic condition, is a very intimate and personal experience.  But, it's one that has a very real and long reaching ripple effect on those around you.  It impacts EVERYTHING!  Your caregivers, loved ones, friends, school, work, and even your medical care team are all people who are affected by your illness, despite even your best efforts.  It's not fair to expect them to know what's going on inside your body unless you teach them and talk it out.  It can make you very vulnerable, but there is no learning without teaching, and no enlightenment when others are in the dark.

             Release ~ Being sick is no state to foster and harbor resentment, pain, hurt, unnecessary stress and toxic people (especially doctors) and situations.  Your chronic illness will supply all the negative feelings and emotions you can handle all by itself.  Sickness is a prime time to release any and all things, activities and people that are not loving, supportive and compassionate in your life. It is a painful reality, but of utmost importance to your own well being to let go of all that is toxic and counterproductive to your health. Take a deep breath, then release!

            Cry and Laugh ~ This sucks, so cry!  You're scared, so cry!  The mountain is too high to climb, so cry!  You are a human being.  You have emotions.  They are part of our stress release mechanism and mental health aids.  So cry, but don't forget to laugh.  Not every moment of every day is the end of the world.  Joy abounds, so laugh. Find something funny and have a solid gut jiggling belly laugh.  I guarantee that you will feel better immediately after.  You aren't a martyr, robot, or Spock from Star Trek, you're sick... so cry AND laugh!

             Live ~ There are moments either in the day, or the week where you feel better than the rest of the time.  Use that time to live!  Push yourself to do something you love, even if it's not as much fun as it was before you were ill.  Find a new way to pursue your old dreams and desires.  Don't let chronic illness rob you of the inner person you are and have always been.  Read a book, take up crocheting, blog, walk if you can, craft when you can, cook when you can, watch something stupid on TV, push yourself to get outside and experience life when you can.  You are still you, so don't forget to live!

It's an art being chronically ill.  A life filled with constant ying and yang, trying to always find the ever illusive balance to help bring peace.  I struggle with this every single day, refusing to let the "me" that I've developed over the last 40+ years be wiped away by hyperadrenergic POTS, NCS, menopause, Hashimoto's thyroid disease, psoriasis and anything else my body wants to add to the list.  I know these artful tips sound a bit preachy and maybe even condescending. They're meant to be.  I've written them for myself so I can read and re-read them again every time I end up back at Step 1 or whenever my resolve wavers as my journey continues.  If you have had or every battled a long term illness, what have you learned along the way?  I'd love to hear from you!

                

POTS By The Numbers

Ok, a cheesy cop out I know, but ya gotta go with the visual that works best...

I suspect that many patients in my position with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (neurocardiogenic syncope) grow numb to having to constantly explain themselves and this disorder to those around them, including but not limited to:  doctors, friends, nurses, coworkers, family, strangers in line at the store, etc.  Trapped constantly between fighting to live the life you had or want and accepting the restrictions and limitations dysautonomia can force upon you is often a daily battle for many of us in the POTS community.  It's a very real, often debilitating and sometimes disabling medical condition to negotiate. I struggle with this every single day and make a point to enlighten anyone who will listen about this disorder and what it has done to my life and how I fight like hell to get on top of it.  It is exhausting!  So when a major media source, like ABC World News comes along to help shed light on this complicated illness, we in the POTS community get a little excited that maybe our struggle can be better understood by the general population, especially the medical community, so that better research funding and more accurate diagnosis can come about for anyone faced with this medical challenge.

Last night ABC World News presented to their national audience what, in my opinion, was a very brief and highly inaccurate portrayl of POTS. Instead of arguing and tearing apart their news story,  I thought I'd help spread a more accurate view, besides just my own personal battle, by passing on what is currently held to be the common statistics on this chronic illness.

This is POTS By The Numbers...

• > 30  Beats per minute heart rate increase upon the first 10 minutes of standing needed to be formally diagnosed with POTS, the cornerstone of the diagnosis, although POTS is not considered a heart condition, it is a malfunction of the autonomic nervous system, and as such, affects several vital organs, including the heart.
• 500,000-1,000,000 Estimated number of people affected with POTS in America.  The numbers vary so much because of the lack of proper education on POTS within the medical community, and therefore, difficulty in receiving an accurate diagnosis.
• 1 out of 100 Estimated teens affected with POTS
• 5:1  Ratio of female to male patients with POTS
• 25% Percentage of POTS patients that are disabled and unable to work and/or attend school
• 3,000-10,000 Prescribed milligrams of salt needed DAILY to help increase blood volume
• 2-3 Liters of fluid needed along with the salt intake daily 
• 30-40 mm Hg compression socks often needed to relieve blood pooling in the legs and abdominal areas 
• 3 Times more energy needed to stand by POTS patients than non-POTS patients
• 2-5 years- Recovery period, defined as relative absence of orthostatic symptoms alone with the ability to perform daily living activities with minimal restrictions, expected for roughly 50% of those afflicted with POTS
•  80  percentage of POTS patients that will respond to a combination of physical therapy, lifestyle adjustments, and pharamacotherapy 

While some of the above stats are subject to change as new research and treatment options emerge, they are generally considered the most accurate stats presented by leading researchers in POTS. I can only speak for myself, as a POTS patient, but I would love to see more of this kind of  info on POTS spread if only for the fact that taking months and years to receive a proper diagnosis with such a brutal condition is akin to a form of torture.  Please feel free to pass on this information to anyone you think may benefit and check out www.dinet.org and www.ndrf.org to learn more about POTS, NCS and other forms of dysautonomia.  Knowledge is truly empowerment!


 *As a disclaimer, I am not a POTS researcher or doctor or statistician.  I am a patient who's dealt with this condition for over 3 years.  That makes me an expert on me, but only me, so take my information as such.

I Need An App For That!

 

I have no shame in admitting that I've become quite the internet and smart phone junkie.  I'm the least technologically advanced person in my household, but years of battling a chronic illness tends to render one with a crapload of time on one's hands, and a desperate need to still feel connected to the outside world.  So, iPhone, iPad, netbook, bring it on...I'm now a reluctant techno addict. 

A casual glance through my iPhone will reveal a lot about my guys, since I hardly ever download apps myself.  Hmmm, let's review, there's the Facebook app (duh), YouTube (again, obviously), Fandango, Amazon and WebMD.  All very useful.  Then there's also a couple of gems like:  Compass (I don't go too far these days, but it always points me in the right direction to my bathroom), Stachematic (I look best in the handlebar version), Coin Flip (for when I need to decide if it's time to go to the ER yet or if I should tackle the monster task of taking a shower). And the family favorite, Fart for Free, handy when my GI issues and the joy of living with 2 males and a funky beagle aren't enough musical accompaniment to keep life unique and fresh, so to speak. Lately, however, it's occurred to me that while I have lots of fun, informative, and compelling apps to get me through my days, there are loads of new app ideas I can come up with that would definitely make my menoPOTS life that much easier.  Here's a few I humbly submit for Apple's consideration...

• POTSdoc App- A cross between Talking Tomcat and Siri, where you can instantly pull up a seasoned POTS or dysautonomia specialist equipped with FAQ and use it to instantly help you through a tachy or syncope crisis, or it can hologram itself to help explain your weird condition to family, friends, and the occasional stranger or EMT who might wonder why you're hanging out on the floor.  I need an app for that!

• Mother Says App- Perhaps something like this is out there, but I have yet to find it in the 500,000+ apps in the App Store.  Mother Says, and it's partner app Father Says, can record your voice with numerous sayings you belt out to your children on any given day.  "Did you take out the trash?"  "Pick that up!" "Did you finish your homework?"  You could easily record your own common parental rantings, in your own stern parental tone, and walk around the house pushing the magic buttons that would subsequently belt out your commands, saving your voice and energy for other more important tasks...like facebook and pintrest.  The Honey Says app would be super helpful too!  Sayings like "Did you pay that bill yet?"  "Come on, would it kill you to put down the toilet seat?"  and  "Is it happy hour yet?!?" would also be super helpful for me.  I would totally buy that app!!

• Medical Mirror-  There are many times I've looked in the mirror thinking I look like death, because I don't quite look like myself and I feel like death on the inside, only to run into a friend or acquaintance who reminds me how fabulous I look, so I must be better.  Don't get me wrong, I love getting compliments, but when you are using every fiber of your being to just get dressed and walk out the door, there are moments that you secretly wish others could see you the way you truly feel inside, if only for the better understanding factor. The Medical Mirror app would use the camera feature, so you can take a self portrait or use it just as a mirror and it would reflect back the image of how you truly feel inside.  Kinda like so:

  

  Feeling like a million bucks, thanks!
  Forty is the new 90!

   

  
  

  

  Just keep smiling...

• What Was I Saying/Doing Again?!? App- Ok, now this one has a much broader consumer base.  I know a bunch of teens, middle agers, old folks, and sickies (like myself) who get stuck in a moment of brain fog and distraction and totally lose track of what they were saying and/or doing.  This could definitely be a big seller!  Using GPS technology, Siri voice response and recording, and maybe even the camera feature, you can activate your WWISDA app to be your little eyes and ears as you roam about the day.  Hit a glitch mid sentence in a convo, roam into a room not remembering why, just ask "What Was I Saying/Doing Again?!?" and the app would automatically play back the last 20 seconds of your convo, or show you a picture/video of what you were doing 1-5 minutes previously, and/or chart a course on where you came from and the likely hood of where you were heading too.  POTS and menopause has definitely done a number on my brain, so I could REALLY use an app for that!

Well, there it is, my 2 cents for the app world.  Oh sure, there's many more random app ramblings gurgling in my foggy brain, but even just these few would help a Queenie out loads.  Too bad I'm not bright enough to produce them.  Guess I'll have to leave that part up to someone else.  Do you have a brilliant or sarcastic app idea?!  I'd love to hear it!!

 

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.