Forward

I must admit I am in a really bad mood.  I just left the grocery store for the second time.  I went once, got so fatigued and overwhelmed I got what I needed and headed back.  Rested, ate, and was irritated with this entire situation I got enough strength to go back.  I am also in a bad mood for reasons that need not be mentioned, just enough to say do you have that individual in your life that is like a tic under your skin.  And even if they aren't doing something that should make your skin crawl, it does anyways.  I remind myself of every cliche thing my mother would say about people like that, but despite striving to be my highest self - sometimes the tic wins.

And I don't know why but for some reason it seems to be the time to finally post the one I have edited over and over, and no matter what it never seems quite right.  Maybe because I know even in her zen higher self state, Julie would be able to put this tic under my skin in his/her place, so much better than I ever could - so if you are watching from above, do something a little sneaky!

I briefly mentioned Julie and her blog, www.cellwarnotebooks.blogspot.com in an earlier post, but it has never seemed sufficient.  I have never signed into this blog without thinking of Julie.  I had been putting off writing because I didn't have the energy, nor did I really connect with the blog forum - all that changed when I read Julie's words.

I think its fair to say that anyone who knew Julie Forward in high school and knew me at that time of our lives on the surface we were most certainly excellent examples of two sides of a coin.  Julie had a laugh you could hear across the hallways, she was fearless and could put most people silent with a look of those piercing eyes, she was an extrovert when necessary but held the mystery of an introvert.

But when I read Julie's blog, all I saw were our similarities.  This experience of connecting to her writing, is not mine alone, that was one of her many gifts as a writer, taking her experience and like a looking glass, it not only gave you a glimpse into her heart and world, it gave you a glimpse into your own.

Julie faced a terminal illness, which is night and day from my current challenge, and how she found the physical and mental strength to write during this time is awe inspiring.  Julie was also a mother, and to face the reality that you are not going to be able to be present for your child will always be a part of Julie's story that forever breaks my heart.  Julie was precise and poignant in her writing; these words will give her daughter an insight into her mother, that some of us never experience. It is an extraordinary gift.

Julie also possessed a physical courage in taking on the pain and side effects of brutal treatments and a brutal illness.  I think anyone who knew Julie, would expect nothing less than a fierce battle - and most days its impossible to believe she "lost" it in this world.  The years I knew Julie, I would have bet the house on her no matter what the wager.  As I wrote on her caring bridge page, she lost the battle but won the war.

One of my favorite parts of a book are the opening forward, dedications, acknowledgements and thank yous.  When I first got a kindle, I didn't realize I had to back page to find them and I found it impossible to begin a book without reading them.  They offer a tiny insight into the author before you leap into their world, true or fiction.  Some are very direct, some are cryptic, a special message only the receiver would understand.  I enjoy seeing a pattern of the dedications of the same author on their different books.  Its the author's Oscar Acceptance speech of sorts, without the fancy red carpet.

So, if this was a book, this is my Forward - My Dedication
Chronic Fatigue Chronic Hope, would not have been written with out the courage, hope and beautiful writing that Julie Forward DeMay paved in Cell War Notebooks.  It was her selfless exposure at a vulnerable time that opened me up to a journey I thought of taking, but my critical self was too scared to take. It doesn't matter what form this blog ever takes, it is in taking it that matters, and Julie you taught me that.  From the bottom of my heart - thank you.  You wrote a blog, that became a book, that will live on and inspire forever.

Leap of Faith

The last 24 hours I have felt a bit like I was walking on a tight rope, just focusing on a point across from me to get to the other end of the line.  Balancing between feeling mildly sick and quickly going to the other side.  That's the flip side of trying to get well, the treatments often make you sick.  I did well until about four hours after my treatment and then without warning a massive shift began to take place.  I had to concentrate on my arms and legs, holding them tense to prevent them from shaking.  I was starving, and had the feeling of a blood sugar plummeting, all while feeling nauseous.  My left side, under my rib felt swollen and bruised.  It felt like a mild flu, I knew it could be worse, but that was the thing - I kept getting worried it was going to get worse.

I read an article where Michael J Fox said his favorite quote was something to the affect of, "if you worry about something and the worst case happens then you have lived through it twice."  I try to be mindful of that quote and stay in the moment, however most times I am not that successful.  It should have been a clue when at a young age I wrote a poem titled, What If... It seems I never was blessed with that wild abandon of a teenager, where life feels invincible.

I constantly question if I am doing the correct, or best course of treatment - and only when I begin to surf the web and see post upon post of people suffering like me and trying any number of drug treatments that are not working - I remind myself, there is no perfect path paved for this illness, and much like any illness there has to be a leap of faith.  Last night, I was staring out the window, I focused on how lucky I was, many more people have illnesses where their leaps of faith have life or death outcomes.  Others face illnesses where there is no treatment to be found.  So if I have to endure flu like symptoms to get to the other side of this, I can take that, its the worry in my head, will this get worse - what new symptoms may develop - what if on top of this I get cancer - the "thinking" of what ifs never seems to end.  My dad has always told me, "you think to much" and this is true.  If I was healthier I probably should have been in the CIA, I can't help but walk into a room or a situation and analyze every possible scenario that could take place.

I know personally individuals that have leapt over mountains for their health and in comparison I am jumping over foothills.  But perhaps that's the problem, the what if...I have never been  one to think "why me" more like, "why not me".  I have been in the extended circle of great strength, a double lung transplant, ALS, pancreatic cancer, severe shingles.  I have witnessed or been privy to stories of these triumphs and tragedies, and I think of the faith these individuals needed to have to go on every day.  I am not talking of faith on a sprititual level, faith in themselves.  Faith that they have more strength than they thought, more courage than they thought, more mental toughness than they thought.  Faith in the doctors that come in or out of their lives.  Faith in new treatments, faith in others that they will not disappoint when you need them most.

I swayed and lost my balance, but I didn't fall last night - somehow I had faith that it would get better not worse, and at 6pm this evening I was lucky enough to walk down the courtyard with my loyal Sophie and see a gorgeous Arizona sunset.

Let's Talk Countertops

I've been in Phoenix since the 10th of January. Today was my third blood treatment, but more importantly the second this week.  The goal was to be strong enough to handle two in one week.  And despite understanding behavioral medicine, and the theory behind it, I can almost guarantee that even if I had 50 of these treatments I would be as nervous for the 51st as the 1st.  Part of the problem is that they are a bit unpredictable depending on your hydration, overall well being, thickness of your blood, plumpness of your veins - you get the picture.  There are many variables that determine weather the treatment will go like clockwork or go like today.

Normally during these procedures, I grill my doctor on personal details of her life so I can be distracted that at the moment I feel like a victim of a vampire - this normally works quite well, and she is generous enough of spirit to go along with my banter.  Its quite impressive how she can do this all the while being laser focused on the procedure she is performing.  Its much like the surgeons, or the fictionalized versions I see first had on Grey's Anatomy, having a heart in their hand while discussing so and so's recent breakup.

I knew I was going to get the treatment today.  I knew its what I needed, and I had a feeling that she would go ahead with it.  So while I started out quite brave in heart,  I quickly became a chatter box one minute, closing my eyes the next listening to Adele, and then like at funeral when you are so upset you burst out laughing - well I had that emotion too.  We started on the left arm, and the blood was just not moving into the tube, then switched to a butterfly.  This isn't working, need to switch arms, clamp, hold - can I get a homeopathic to calm me down, in a second - your blood can't clot here - okay too much information poke me again - this time, working much better, after five not so pleasant in vein movements of the needle.  Then, time to get my clean blood back, hallelujah!  Wait, not working again, won't back in either.  Stop, hold, re-prick - new vein.

At this juncture I have moved to discussing my doctor's possible bathroom renovation, I would have been more invasive in my questioning, but there was a young man next to me getting an IV and even in my delusional keeping hysteria at bay state, I wouldn't ask if she was dating with someone else in the room - it was a nice check on my mental state, I hadn't yet gone off the deep end.  So countertop options would have to make do.

Forty-five minutes later - I think - I have no concept but it felt like an eternity, it was over.  And again, I felt like bursting into tears - but I didn't, I made it, and now after feeling like a just got through the iron man, I'm in bed - but you see the silver lining is yesterday I had an hour.

I went to the pool, did my leisurely laps, took a shower at the hotel and when I was getting dressed I looked in the mirror, and my old self was staring back at me.  My eyes were brighter, I wasn't so puffy from swollen lymph nodes under my neck, I looked alive.  And when I got back, my boyfriend commented that I looked really chipper - and that's the thing - I was.  I had one hour, one hour where emptying the dishwasher was a piece of cake, my body didn't hurt everywhere, my head felt clear and my nerves felt calm - and that hour is worth every minute of the draconian procedure that much like Edward loves Bella, where he loves her but is afraid he will kill her, that's how I feel about these treatments - two contradicting emotions at the exact same time - because that hour was priceless.

If that hour can turn into two, then four then a day or a week - I'll do it again and again.  And we are thinking sand color for the countertops -

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 bad...now 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 that...no 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.

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

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 bed.....to be continued.

Research First

I found this after site after being on Laura Hillenbrand's facebook page, and as I started to read it got so overwhelmed.  Thinking of all this information I would like to add, questions I had, making sure research isn't like I have said previously constantly looking for the "magic bullet" - but you see that is how medicine is - and I truly believe that this narrow view that we have taken to explore our human body doesn't always fit the map they are using to decode it.  I am convinced, much like let's say autism, it is closer to a tipping point theory. To be quite honest, I my head is so foggy today, I can't seem to articulate what I want to say, but this website is a wealth of information - so I wanted to include it asap.http://www.research1st.com/