Saturday, January 28, 2012

Cringe Worthy

I did it again today.  Said yes when inside i was pleading no.  Its one of those things you learn as a child, to be polite, and not offend someone.  But is it offensive, when it makes you uncomfortable?  I watched a few minutes of the Oxygen reality with Winona Judd and her mother and during their life time of therapy they learned that you should ask a child or adult for that matter if you can give them a hug.  Seems a bit melodramatic but the overall message i do think is sound.  Its always a joke about having to kiss an elderly relative, some sit com with a nerdy 13 year old boy getting lipstick stained by a great aunt.  But there is some merit in learning early on that you don't have to do things that personally make you uncomfortable.

So here was my self imposed awkward moment today.  Today was a good day, after the last four days of primarily lying in bed or the sofa, besides eating and doctor appointments - my one goal was to make it to the pool.  Just make it there, and then even if you just get into the pool, that's a bonus.  So, I made it to the pool, and there was an extremely obese man doing laps.  I got in and began doing my laps also, very slowly.  Its hard not to make eye contact when you keep passing each other, and when he got out he sat on a chair right near the edge where i was swimming.

So, to break the ice, I engaged in a polite conversation admiring his water iPod - I didn't know they made those.  He enthusiastically told me the brand, and reached over and handed them to me. We continued exchanging polite conversation, "oh you can buy it on Amazon..." or "Sports Authority" - its about 100 bucks, that's not wait for it, her it comes..."You can try them out" Sidebar - I don't really even want to wear my sister's or best friends' ear buds, let alone a complete stranger's- the whole thing just made me cringe - I politely decline, then the "no - no, really you should hear how they work, if you don't mind show tunes" - Here was my way out - why didn't I exclaim I can't stand the mere mention of show tunes, but no, I "accidentally" dropped the buds in the salt water pool, hoping it was as effective as chlorine and gingerly set them in my ears..."No, you really have to put them in all the way so you block the barrier when you go under water" Would he not give up, doesn't this at all seem weird....So I did what any "polite germaphobe hypochondriac would do"  I shoved the damn ear plugs in, did a quick lap to John Mayer and handed them back with a big smile.

When I got out of the water my ears of course itched and my boyfriend laughed, why would you put in someone else's ear buds?  Thanks a lot, couldn't you have come over and said, let me see just let me sink.

I know why I did it, if it was some buff 20 year old hottie, I would have not put the buds in, because I wouldn't have been worried that he would have been offended.  But because this man was so obese, I took that on myself, he may be the most confident person in the world, who I am to say- so instead of doing what I wanted, I did what I thought wouldn't hurt his feelings.

I have always struggled with being a yes person, and only recently when it became too difficult to say yes to things that I just couldn't anymore have I gotten use to saying no, or doing what is best for myself - but clearly I have a ways to go - I'll let you know if I get swimmer's ear tomorrow.

Wednesday, January 25, 2012

A Rose By Any Other Name....

Would it smell as sweet?  Probably.  But what is not as sweet is the label of Chronic Fatigue Syndrome.  And thanks to a lot of hard working people, the name itself is under constant debate.  This may sound silly - if your sick, why does it matter what its called? Well, apparently it matters a lot.

The name I most identify with, which has been under consideration, is Neuroendocrine Immune Dysfunction Syndrome - wow now that sounds f'ing scary!  I don't chose it for the scary reason, but that it most accurately describes my history with this illness -

A brief history was my lack of hyperthyroid diagnosis, because my labs didn't match the normal findings. So I suffered with anxiety, depression and even a suggestion of anorexia by a top endocrinologist - because "I couldn't be hyperthyroid since my thyroid stimulating hormone" wasn't out of range - normally the first clue to a thyroid dysfunction.  Well that makes sense if your hypothalamic-pituitary axis is working properly.  Mine wasn't.  Therefore, despite having a relatively normal TSH value, my actual circulating hormone was still high....well wait again, as I was told by another doctor - "you technically are not hyperthyroid because you are one decimal short of the actual diagnosis...." I am not joking here - so you have a woman, with a maternal history of Grave's Disease (auto-immune hyperthyroid) suffering from the following symptoms: tremors, anxiety, heat intolerance, excessive weight loss (enough to be clinically diagnosed with anorexia) - despite excessive hunger and fatigue....but "the lab isn't 4.1 its 4.0 - and who is crazy now?

Did you seriously go to medical school and did they strip away all common sense?  Did you ever think that labs are an average RANGE that is based upon middle aged men?  Its a statistic - its not perfect - treat the patient....Did you know this, its not like there is a male thyroid value and a female thyroid value...but think about how different our hormonal pictures are? Its absurd to not question a lab value if your patient exhibits text book thyroid dysfunction but is a decimal off?  I went to three different physicians, and not one did a full thyroid panel.  Talk about dogma.  But they were happy to shove antidepressants down my throat, who wouldn't be depressed - I was walking around dying of heat, looking skeletal and kept being told it was all in my head.

So there I believe was the beginning of my downfall - the endocrine part, that left my system so exhausted the immune dysfunction had a happy place to gather steam.  I had mono at age 12, tonsillectomy due to chronic strep at age 19, and had carefree twenties until the thyroid hit.

But back to the name.  Unfortunately names matter.  That is why parents spend a painstakingly amount on effort to find the perfect fit for their new bundle of joy.  Its why a name can be so easily tainted, meet a few Jennifer's that really piss you off and a friend says they are thinking of Jennifer as a baby name and most of you will begin to cringe.  Its makes sense, we name things, we name feelings, emotions, we create knick names as terms of endearment.

Its it hot topic of debate, because it should be.  Names and words carry power, and you walk in with a wimpy whiny sounding illness, you often get treated like a wimpy over-reactive person.  So a shout out those of you spending your energy on the name change - and if my vote counts - you know my choice!

The following is the wikipedia entry regarding the Chronic Fatigue Name Debate -
Name Debate Info

Friday, January 20, 2012

Back on the Horse

There have been runaway brides - well, you could call me a runaway passenger.

The majority of my life I loved flying, it was back in the day when my mom made my sister and I dress up for a flight, often in coordinating outfits.  It was the thrill of going somewhere new and exciting, the little utensils on the plane, the flight attendants with their warm smile and bright lipstick and of course the captain giving out the little wings that you could stick on your shirt.  I loved looking at the world below, get smaller and smaller.

In my mid twenties, most of my close friends had struck out for destination, anywhere but Milwaukee.  And once again, my love for flying was taking to a whole new level.  This time I was flying solo! It was the independence of getting your driver's license with a much larger playing field.  I felt so grown up, walking into an airport by myself, getting some trashy magazines, and the great invention of the Disc-man brought me my own play list.  I felt so cosmopolitan - visiting friends in new cities, living this new phase of post college life.  It was also at this time that my best friends one by one were getting engaged.  And as we were all doing pretty well for ourselves, with no one to support, we started the tradition of meeting in a city for a girl's bachelorette weekend.  These trips to this day bring some of my fondest memories of my group of friends.  We always went where someone at the time was living, and we had a specific itinerary - casual dinner, special dinner where we would tell the bride to be how special they are to us, often a mix tape of songs that remind us of them - putting it in words it sounds like a lifetime movie.  So off I jonted - L.A, Vail, Atlanta, Naples (FL) and my family's Lake House.

Then there was my France phase, I have been to Europe four times.  Once in high school with my parents to London, and the other three times all to France.  The first trip with my mom and grandma, to get to Lourdes!  The second my friend since kindergarten Kim and I did the "backpacking" trip, minus the backpacks.  And the third when I spent six weeks living in Nice, and that trip was my first brush with a not so pleasant flight experience.  At the time I was taking my pre-requiste science classes to apply to medical school.  I already had my bachelor's degree, so I was a part time student, and right before winter break after a nasty break-up I walked into the travel abroad room and asked if there was anywhere to go over the holiday.  She hooked my up with Hofstra University's program - the were going to the South of France - perfect.  I went to New York, stayed with my cousin and two days later joined a group of students that all new each other as we headed off to Nice.

 I was older than all of these students, and this adorable girl Heather became my "little" sister for the trip.  We were headed home and boarded a small charter flight from Nice to Paris.  The first sign should have been that the flight attendants were wearing blue jeans and red visors - as we piled into the flight, Heather and I sat next to each other.  It was only a 45 minute ride to get to Paris, it was a gorgeous day.  Flying so much I had the dings and slow descent thing down pat in my head.  And as we started our decent we kept hearing this very load rrrrhhhhhhhnnnnn noise, and then chug chug chug, it was the sound of trying to turn a car over and it gets to the end and struggles and struggles, then dies.  Heather looked at me with her huge brown eyes, filled with fear, I kept saying, don't worry its a small plane, and we are right by the wing so we hear everything.  But in my head I knew better, and then our slow decent, began a series of circling.  The professor leading the trip was talking to the flight attendant about our short layover, and she assured him nothing was wrong, and we just needed to circle d/t too many planes needing to land.  Then that noise over and over and over again, now Heather's eyes were dripping the slow tears, her one hand covering her ears mumbling make it stop make that noise stop and my right hand was devoid of blood.  I knew it was the landing gear, it wasn't going down.  We began our descent, I saw the tree line - I counted slowly in my head down from three.  Three , breathe, two, breathe, one - we should be on the ground and suddenly, my head slammed back into seat as the force of our abrupt ascent thrust you backwards.  Now I was scared, but I had my "little" sister next to me who had already lost her mom, and I had no choice but to be calm.   No word from the captain, not a word from any passengers, just eyes that showed confusion and fear.  We landed on the second attempt, hard, but landed safely.  Then spent the next 8 hours in the airport and the second flight on the massive Air France was hit with so much turbulence, we were not allowed to leave our seats.  And despite these back to back stress filled flights, I still loved to fly.

heading to be continued.

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