But I don't remember getting bit...?

Hello again dear ones!

I do hope that yesterday's three-post writing splurge didn't leave you overwhelmed.  This has been building in my heart for a while and now there's a lot to get off of my chest.  Today I will answer another common question, for your general information and for my own reflection. 

"How did you get Lyme's?"  Simple - you live in the northeastern US and spend time outdoors between March and November.  Ticks live in grass and like to stow away on living creatures.  They tend to prefer penthouse views from the top of a person's scalp, but they will settle for a protected place, like under a dog's camouflaging tail hairs. Once settled in, the tick bites its host and feasts on it's blood. The host or hostess is then infected.  A lot of ticks are just pesky, but the Deer tick (one of the teeniest and hardest to spot breeds) can transmit all sorts of nasty things, like Rocky Mountain Spotted Fever, Lyme's, and a few others.   

 GOOD NEWS!! It usually takes the tick a while to attach, so if you shower and have a friend check you for unwelcome hitch-hikers after nature adventures, you'll probably be fine.   I have always been faithful about checking for ticks and have pulled a few off in the past, but they were always the big ones - dog ticks and the like.  That's the real kicker - I'm ill with a disease transmitted by a creature I don't even remember getting bit by.  

(Thanks for the cool picture, MSNBC.com!  http://www.msnbc.msn.com/id/41973641/ns/health-infectious_diseases/t/under-the-radar-tick-diseases-spreading-across-us/#.TtWNirLNlTA)

When I first started feeling symptoms in the late spring or 2011, they were easy to ignore because they came on one at a time, barely noticeable at first.  Today, I fumbled back to my room between classes and chocked down more pain killers with caffeine because I could't get through class and chorus rehearsal without them.  My body can't do it on it's own. After rehearsal, I sat hugging my knees on the floor, crying - out of pain, frustration, and discouragement.  

And to think - I never found the #$@%&* that did this to me.  The only thing I can do is be grateful that it's not entirely fatal, drug up, and smile.  Smile? What?  Yes, smile.  Smile because one day, I will be happy and wholesome again.  I shall be made new, and I will have no more sorrow, nor will I cry, neither shall I be in any more pain: for the former things will have passed away.  This is the eternal Hope that wipes away my tears.

All my love,

~Melissa

"Something's Not Right"

Dear ones, I see now that it is unfair for me to go ranting about the questions you ask when you are probably chuck full of real, meaningful questions.  Allow me to answer some of them in a prologue to this web-log. ... hehe that rhymed!

Sometime at the end of spring 2011...

 I had just gotten settled back at home after three weeks of running around (beach, cousins graduation, etc.) when I came down with a server sinus infection.  A hearty dose of antibiotics cleared up my airways quite nicely, but I was still constantly drained and unusually fatigued.  I wanted to blame it on the recent travels, or the fact that I was out of shape, so I did.  After a while, I started noticing my knees and feet were hurting more than usual.  It's probably just the family curse of bad joints getting to me, I thought, so I ignored it.  At the beginning of June, my mother finally looked at me and said "Mel, this isn't you. Something's not right."
     That's when I started to get concerned.  After several Web MD searches and consulting with some close friends, we had several running theories on what it could be.  My aunt said it was a thyroid imbalance, my mom swore it was Mono, and lots of people speculated....
"Could it be family joint issues and a summer flue?" 
 "You're probably anemic - do you eat enough red meat?"
 "Stay hydrated.  It's so hot out, you might have an electrolyte imbalance - I'll that's what's causing your fatigue." 


     Trying to stay positive, I tried some non-medical remedies in case it was something above - I switched to an all-natural high-protein high-complex carb diet..  No change.  I still woke up every morning exhausted and aching.  Perseverance and sheer determination can only get you so far when you're physically falling apart from the inside out, so I gave in and made an appointment with the family physician.
   The physician wanted to pin my symptoms on family history (joints) and depression (fatigue) but decided to order a gazillion blood test, just to be sure.  After 9 days of anxious anticipation,  they called with lackluster results.  Thyroid, electrolyte, anemia, kidney, liver, blood sugar, arthritis tracers, and Lyme's - they ALL came back either negative or normal, respectively.  So, there's nothing biologically wrong with me? ... What...? But why am I in so much pain?  That's when the real fear set it....  Has it been psychological this whole time?


     Thank God for my Mother.  She knows me.  She knows when I hurt, when I'm sad, and the difference between the two.  She made dozens of phone calls to specialists in the area (arthritis, Lyme's, alternative Dr.s) and harassed our family practitioner for references until she got me an appointment with an infectious disease specialist for mid August.  The specialist treated me differently.  He saw me and heard me.  Looking me in the eye, he told me that everything was going to be ok.  My soul breathed a sigh of relief - no one had said that to me before.  Everyone else around me had been just as filled with quivering uncertainty as I was... or didn't take me seriously (but that's a rant for another time).
 (Note: this part should be read out loud with an Indian accent while bobbling the head for the full experience)
     He said that what I had was "probably one of the two dozen or so diseases carried by the tick - most of which are undetectable by our testing methods - all of which are curable with the right treatment. We will put you on 30 days of heavy antibiotics.  If it's Lyme's (or something tick-born) then you will feel worse before you get better.  If your symptoms persist, come see me again, if not, don't bother.  You will be fine."

I have never been happier to receive a diagnosis in my whole entire life.  I'm not depressed after all - I'm just sick- HOORAY!  I cried tears of joy as I left the doctors office.  Its times like this when a label is the most liberating gift one could be given.

I took the blue pills, felt worse, felt better, and left for college.
I thought that this was the end of the story.  But I was wrong. It would be three months before I realized that this was only the beginning.

*TO BE CONTINUED*
wow, sorry for the oober long post, y'all!  :-P

How are you doing? Kosher and Non-kosher Questions

Here is a typical conversation that I have countless times each day.
Each time makes me twitch.


"Hey Melissa!"
"Howdy, friend, long-time-no-see!"
"How are you doing?" 


That last question can be one of the most awful questions to ask someone in my situation.

      It's not because we don't love you, it's not that we find you unimportant or anything like that.  These words render a much greater explanation than we can usually give in a passing conversation.  This is especially true when the inquirer is unfamiliar with what's actually going on under the surface.  Sometimes there isn't enough time in a given situation for me to explain my medical history for the past year.  Sometimes I'm in so much pain that the very last thing I want to do is talk about it - putting my mind on the very thing I try so hard to ignore.  I'm touched by your concern, I really am, but please, don't ask unless you have the time.  Otherwise, I might give you a puny answer...
 "um, I'm ok... could be better, but not dead yet..."
Or worse, I might lie to you... "I'm doin' just fine" before rapidly changing subject..."how are you? how's school going?"

 Please forgive me when I do this - sometimes it's my only defense against this yucky question. I'm not trying to be fake, I'm just miserable and protective.

    Training my mind to forget the pain for the sake of daily function is not a simple task.  It has taken me months to perfect, but you can ruin a winning streak by asking me this question.  When I'm distracted by what I'm doing or who I'm with, what matters most is then on my mind - not the swollen joints and fatigue which I can do nothing about.  That's how I was able to do things like volunteer and babysit and sing on the Praise team all summer (well, that, and a TON of Excedrine) ... those things matter so much to me, I made them my focus, leaving no room for self-pitying or misery-wallowing. When you ask "how are you doing?" you force me to put my attention back on myself and therefor back onto my pain.  Don't do that - please, just don't.

     There is one exception to this general rule:  if we both have the time for a real conversation, you are familiar with my back-story, you are genuinely concerned for my well-being, and you are ready to give positive support, THEN you may ask
"How are you feeling today? Have you noticed any changes since last we've spoken? How's the war?  Any news from the front lines? Is there a more specific way I can pray for you? Are you up to doing X today, or can I do it for you?"
     Those are kosher questions.  Those are loving questions in an appropriate context.   I need to be asked these questions on occasion!  I need someone to prompt me to reflect on this, and I need to know that someone still cares.

Theoretically, you are reading this because you asked - because you cared. I can't thank you enough for caring - I could not have survived the summer or this most recent flair-up without your loving concern and constant prayers.

All my love,
~Melissa

P.S. - Have any questions about Kosher and non-Kosher questions to ask people in similar situations? Leave a comment, or better yet, make a coffee date with the friend herself/himself.
 

Ta-Da! Here I am + Mission Statement

Hello!

     In case you haven't figured out, my name isn't "Melissa," but here I will refer to myself by that name for privacy's sake.  I wish I had started this magical online-sharing diary when everything started this past summer, but now is as good of a time as any.  :-)  

      As it says in the side bar there, I started writing this blog with two goals in mind.  The first came from my seeing a need in my own life to record and follow the symptoms of my disease carefully for practical and emotional reasons - so here is my feeble attempt at record keeping!  Ta-Da!  This is for my own good.  

     The second reason is much less selfish: I write here to tell others about what I'm going through.  Many people have heard that I am not well, or seem to recall me being out-of-whack all summer or a little slow at the beginning of the school year - but how many people actually know how I'm doing now?  The answer - 0.  Some of you are clued in, others guess, and still more ask... but it would be impossible for me to tell each and every one of you how I'm doing, largely because it changes on a daily (sometimes hourly) basis. This is to inform you because you deserve to know.  

     The reason I try not to post about this kind of thing on Facebook is because it's very personal to me and I don't need the whole world knowing what I'm going through - I just need you.   This is not a place for my sappy loved-ones to drool all over with sympathy, or for doctor wannabe's to plaster me with labels and diagnoses.  Just give me a hug next time you see me, or send me legitimate health articles with helpful information.  This is for my own good.  This is to inform you.  

     If you know someone else who's struggling with misdiagnosis or illusive illnesses, please connect us so they may get some hope from this shared diary - they are not alone in their pain and I hope to bring them comfort.  If you think of someone else who deserves to know, please contact me via e-mail to comment or make suggestions.  Thank you for coming on this journey with me.  I crave your prayers.

All my love,

~Melissa