Catching up with old, fuzzy Friends

Good evening everyone!

      Today was a good day.  There was intermittent pain, but it was one of the best days I've had for a while. I was asked to run the morning routine at a non-profit barn where I have been a volunteer for six years. This meant getting up hours earlier than normal (well, at least for Christmas break it was hours early!!), bundling up against the sunless cold, and working my butt of for over 2 hours without compensation.  ...and I wouldn't trade it for the world.  The horses who live there are old, semi-retired schoolmasters, and the most understanding souls I've ever come across.  After spending most of this past summer with them, they think that I myself am a strange biped equine!

      Horses remember everything.  When it comes to people, they never forget the hands that helped them into the world, that buckled on that first halter, that feed them every day, that heal their wounds, that clean their coats, that rub their heads, that sneak them treats, and that pat them affirmingly after a hard day's work.  Each of the nine horses I took care of this morning treated me as if I'd never left for school three months ago. Like continuing a paused conversation, we fell in stride together and picked up where we had left off.  I make a point of always talking to horses like they speak English. From how the respond to me, you'd thing they'd heard every word I'd said.

       Needless to say, these horses have touched me very deeply.  When my symptoms first appeared this past summer, the horses could tell.  They would see me weary and tired, look me in the eye, then slow down to match my pace.  When my hands hurt from the arthritis, I'd stretch them around a horses curved barrel and let the soft heat saturate my being. When I was distraught about my broken state, the horses would let me clutch a handful of mane and bury my face in their necks. One very special horse would turn around to check on me as I wet his coat with my tears.  I could gawk for another 200 pages about that "special bond" between humans and horses, but I think I've made my point.  

Two friends saying "Hello"

     One of these horses, "Dancer," was very lame all summer.  He had a serious history or laminitis and had foundered before, but this round was worse than the others.  He could barely walk at times from the pain in his feet, so he was put on stall rest with thick bedding to cushion his tender hooves.  I was constantly going to the barn to check on Dancer, clean his stall, change out his water, medicate him, and keeping him comfortable as he healed.  He was my healing partner: taking excellent care of him in his weakness reminded me to take care of myself in my weakness.  Truth be told, we were actually taking care of each other.  I received a letter from the stables last week, informing me that Dancer had suffered another round of laminitis and had to be put down.  It was the wise and merciful thing to do, but the barn wasn't quite the same this morning when his fuzzy brown head topped with an ebony mane didn't appear over his stall door.

Debunking the Debby-downer

Dear Patient Readers,
    I've been skimming among my past posts and have seen an sad trend developing.  Unintentionally, this blog has been where I rant relentlessly about miseries without sharing joys, triumphs, or victories.  Some of you may think that I am a miserable person to be around, majorly depressed, or the worlds most verbose Debby-downer. Rest assured, I am non of the above!

After identifying this trend, I took some time to figure out the why.  Why so negative in my writing?  Life is pretty darn good in general, and as painful as my Lyme's can be, it's not taken my soul or forced me to change direction with my life.  Then it dawned on me - I post late at night.  (Umm ...what?)  I go through my whole day like an almost normal human being, bouncing around and doing things to the best of my ability.  Then, someone will  ask me non-Kosher questions and look me in the eye, genuinely concerned.  As touching as it is to know that I am loved, it's really distracting to be asked these questions.  They draw my attention back to my body and seek out any pain that might be there, whether masked or suppressed.  See my 2nd post for more on Kosher Questions.

I say things like "I'm just fine" "Pretty good" "Alright" "Not too bad" and "Shufflin' on," with each response gradually becoming less rosy and more real as the day wears on and the Advil wears off.  By the time I sit down to type, I am out of positive/optimistic/cheerful things to say.  I've used them all up on my friends and family.  WHY don't you just tell them the truth?  Tell them exactly what you feel!  Well I can't do that, now can I?  Then they look at me with pity in their eyes, and with groaning voices, pat my shoulder and say "aw, pumpkin! I'm sorry you hurt." "aw, baby-doll, have you taken any meds to help?"  "aw, why does my sweetheart feel bad?"

Aw, Aw, AAAAWWWW!!!!!! >,<      yuck.

 I hate letting people down, and I hate it when other people try to suffer for me.  These groans of sympathy make me feel worse because I know you're suffering too.  I don't want that to happen!! DON'T SUFFER EXTRA FOR ME, I'm doing it enough on my own, thank you very much.  My family is the number one perpetrator in this business. Others do so unwittingly, but that's to be expected from the uneducated.  I enjoy filling up others with hope, joy, and sunshine, but just because I do so whenever I can does not mean that I'm inherently void of darkness and turmoil.  It is so easy for me to gift my happiness to those around me, but when I pour out my heart to my loved ones in person, all that's left to write here is in my mind - the angst- and my body - the pain. That's why I can't tell them how I really feel - we both end up hurting.

This is my very long-winded way of saying PLEASE do not fear for me, cry for me, or suffer for me in any way.  PLEASE do not dismiss me as a whiny blogger who just wants attention.  PLEASE understand that what I write here if for my good too, not just to keep you informed.  It has been incredibly therapeutic for me to set aside time to catalog all of these thoughts and straighten out my feelings without burdening one specific person with my entire life.

dear ones, I can feel your prayers every day.
All my love,
~Melissa

Person Care, not just Health Care

Dear everyone,

I went to the Infectious Disease Dr.'s today - YAY!!! After some trial and error with different entrances and floors to the building, I found the office.  My conversation with the I.D. Dr was as follows...

*Dr. shuts exam room door*

"So what's going on?" 
     "I can't write half a page of notes without being in terrible pain, I can't sing an entire song without my heart jumping around, and I'm too tired to function despite plenty of sleep."


  "How's your memory?"  *listens to heart*
      "Good question - it's not so good, but let's face it, that's a hard thing to gauge during finals week - every one's brains are shot then."

 "Does your face go numb?"  *takes temperature*     

         "Um no, but my fingers and toes go numb really easily, even when positioned normally."

 "Take this prescription, (scribble scribble) if it doesn't get better, we will re-test for Lyme's and see if we can't rule out other issues. Have a nice day."
*Dr. opens exam room door*

From a garden of a home in downtown.

 O.O    Fastest. Appointment. Ever. I don't think the examination table even had time to warm up where I was sitting.  What worries me about this is that those two symptoms - about the memory loss and facial numbness - are only present in the late stages of the disease.  The Dr. didn't seem phased/worried/concerned about it at all, it was so matter of fact one might have thought he had forgotten to bring his emotions to the office today.  I hate that.  I am not a squeaky wheel demanding oil, I am a broken human being, desperate to be pieced back together.  Just because I don't have rabies or AIDS doesn't mean you can treat my condition like it's the common cold and carry such a nonchalant air in this situation. It might not be a big deal to you that I can't knead bread, drive, write, turn door knobs, or even fix my hair without hurting, but it matters to me.   You may not be there to see it, but being unable to go for walks, ride my bike, sing a whole song, or go shopping without heart palpitations or burning fatigue really slams the breaks on my daily functioning.

 Mind you, I'm not a corporate CEO, a stunt double, a firefighter, or even a soccer mom.  I'm just a student - all I have to do is College, but even that is sometimes more than I can handle. That's why I'm not applying for a seasonal job this Christmas break.  I am a trained coffee-barista and very employable in that field, but I'd hate to apply, get a position, and not be able to work because I feel lousy - that's just lame.  This winter, my full time job is getting better and once again being whole, full, recharged.
....  but I'd be overjoyed to just normal.

I have the audacity to write this because I know that you care.  Your thoughts and prayers are the strong fortress around my heart.
All my love,
~Melissa

Here we go again

Well everyone, I did it.

     I made it all the way through the semester, including the written tests, without having my hands fall off - yippy! What was going to be a long exam and a short trip home ended up being a short exam and a REALLY long trip home, including a detour for a friend that somehow landed me in rush-hour traffic in the capitol.  Well done, Steve the GPS, well done. Wrapping my right ankle prevented it from swelling up while I was driving - I learned that trick from wrapping horses' legs in polo wraps before heavy training.  :)   This mostly pain-free day was made possible by a coffee, a latte, Excedrin, ACE-wraps, and Precise arthritis cream (from the makers of Tylenol, it's good stuff!!).  There ain't nothin' like the right tool for the job, especially when the mission for the day is "get through 'til bedtime feeling like a normal person."

Go get your Happy back!

Hello friends!

Today was yet another good day as far as symptoms were concerned.  I took an Aleve on Sunday, and the only medicine I've had since then was an Excedrin this afternoon.  Yippy!  The Excedrin actually caused a phenomena to occur - it gave me an energy rush, full of life and vitality.  I celebrated with a happy. :-3  Sadly, I am having a hard time remembering when I last felt this good without the help of external influenced.  It was probably more than a month ago.  Sustained, joyous, bouncing excitement filled to the brim with life.  Why have I let myself go so long without this?  How can I continue to get my happy back?  

It could be that every single class I'm in had something (or more than one thing...) due this week, and I'm chipping my way through all of them at a steady pace, allowing myself to relax a little bit more.  It could be that the break in the symptoms is finally getting to me and this is my body's way of rejoicing - outbursts of life.  

Kuzco from The Emperor's New Groove
(aka my favorite movie of all time)

Spring of 2010, I was interning and had to be at the internship by 7am.  One morning, my car wouldn't start.  Begrudgingly, I drove the family minivan, all the while worried sick that my car was terribly broken.  I got to work on time, but by 8:30, my mentor looked at me and said "Melissa, go home.  I don't know what's really wrong with you, but you need to go home and get your happy back.  I don't like mad Melissa." 

       Why did she tell us a story about her car...?        

         Sometimes, life gets to the point where the most important thing you can do with your time is take care of yourself.  I know, it sounds selfish, and some would say it's a waste of time, but I speak from experience; nothing works right when you don't have your groove. When you're heart is in the right place, everything else will follow suit.  An infectious disease specialist once told me it's often mind over matter when it comes to the quality of your life with Lyme's.  Staying positive, using good posture, smiling, and living normally are absolutely fundamental to perseverance.   It is so easy to let yourself fall into despair when you ache - pain and misery are identical twins.

Thankfully, so are Wholesomeness and Joy.  

All my Love,

~Melissa

Where you Live: Body knowledge.

Hello friends!

Today has been a very good day pertaining to the symptoms.  I haven't taken anything for the discomfort or fatigue since Sunday morning, and I'm feeling good - even now.  This is nothing less than a miraculous and merciful respite in the pain.  What an answer to prayer!  Yet it is days like yesterday and today that really make me worry.  It was this kind of good-ok-bad-terrible-bad-ok-good cycle that disguised the severity of my condition for so long this summer.  This is where questions nagged me in my every waking hour...


"Are you sure it was that bad?  Fatigue - not just regular tired?  Maybe it was ___ instead...?"  


I am so grateful that now that I have had so much experience with Lyme's, I can tell the difference between regular tired (late night studying, worked out too hard, etc) and Lyme's tired.  I know when I've just taken too many flights of stairs and when my joints are genuinely inflamed from Lyme's.

Here is my advice to you, dear:  know your body, and know it well.  Know what's pain from external discomfort (my shoe-laces are too tight) and what's pain from internal turmoil (my feet are wailing in agony from wearing those heels all day yesterday).  Here's a list of things that you can take into consideration when you get to know your awesome vessel of life:

• From the Heart - know your resting heart rate, what healthy/normal breathing feels like, and your blood pressure.  If these change, you could be watching a scary movie, or having a mild heart attack, so get to know your heart!

• Use your head - know the difference between a sinus headache, a tension headache, and a real migraine.  The first two can be cured with Vick's Vapo-rub and a good scalp/neck massage, but don't deny yourself real medicine if you need it for something more serious.

•  Feelin' HOT HOT HOT! - I run at 97 degrees F when healthy - what's your number?  Are you cold because the room is freezing, or are you going into shock form a panic/anxiety attack?  Know the difference - prevent frostbite and physio-emotional trauma alike. Observe the opposite for when your hot.

• Macho Muscles - So you played football for three hours yesterday - are you sore from keeping up with the young whipper-snappers, or did you snap a tendon? Is there nerve damage involved? Be nice to your tendons, they're not very forgiving.  Know what your soft-tissue pain means.

• Join(t) Me - You're stiff when you stand after sitting too long, you're knees pop when you squat, your wrist clicks, etc. etc. Some joint discomfort is expected when you're stuck at a deck or in a chair all day, but take stock of what's normal, acceptable, and healthy.  Be good to your'e joints, because once they go, every movement you make becomes painful.

I could put some more specific check-points here, but then you get into age and gender differences.  Please, for my sake, listen to your body and be good to it.  Wear sunscreen, wear DEET TICK REPELLENT, stay limber and agile, and eat your gosh-darn vegetables.  :)

All my Love,

~Melissa

Plaster me head-to-toe in Band-Aids, please.

Today has been another bad fatigue day.  After 9.5 hours of sleep, I had two cups of tea, 1 coffee, 1 Excedrin,and I still took a nap 4 hours after waking up. It wasn't even a good nap.   >:-(

Oddly enough, today I had a lot of the more "minor" or "secondary" Lyme's symptoms pop up.  None of them are crippling or dramatic enough to render their own posts, so they will share one here.

Sleep issues:  Sleep related to the fatigue.  Lyme's is an infection, so some nights I wake up with fever-like chills and sweats that keep me up.  Additionally, Lyme's disease interferes with the body's ability to go into REM sleep.  REM sleep is the deepest level of sleep where the body does a lot of it's repairs and genuine resting.  Lacking hours in REM sleep makes 8 hours of sleep do as much good as 4 hours for me.  The night-sweats are rare, but the REM deprivation is every stinking night.    Oh sleep issues, please leave. Getting adequate sleep is hard enough in school and you are not being helpful. OK? Thanks. 


Heart issues:  Singing gets to be rather interesting and difficult when you're heart is flapping around in your chest like a fishtail. Heart "palpitations" will come out of nowhere and flutter around as if there is butterfly stuck in my heart chambers.  This isn't really an issue unless I'm doing something (like singing) that requires quality oxygen flow.  I am in the school chorus, an a capella group, and I sing all the time at church - heart issues interfere with my life SO much.  Dear heart, calm down.  There is nothing exciting going on and I would really appreciate the oxygen right now.  Mk?  You Debby-Downer, you.


Nausea:  I'm sick to my stomach and hungry at the same time.  I often have trouble judging if I'm actually hungry, if I am getting a virus, or if it's just the nausea.  For the sake of proper nutrition and not getting fat, I usually make the call based on the time of day - no joke. Before Lyme's, nothing ever made me nauseous.  Nausea, you're making this whole "taking care of my body with proper nutrition" thing really difficult.  Cut it out, ya jerk. 

Numbness:  I can be sitting in a well-aligned position and still have digits fall asleep on me. Sometimes, it's unusual places, like the back of my hand or my shin that looses sensation.  It's so inconvenient because the only thing to do is to keep moving.  As you can imagine, that couples really nicely with the chronic joint pain.  -_-   Really numbness, really?  As if dealing with everyone else wasn't bad enough, you had to chime in too?  RUDE! 


Mood Changes:  At first, I though this was my own overreaction to being sick all the time this summer, but apparently going from ordinary to anxious, to bawling, back to ordinary in the span of a week is a known symptom of Lyme's.  This explains why my regular practitioner though I was depressed - I was.... but only a little.  This means I do stupid things like cry in front of people far too often now adays.  This is perhaps my greatest contributor to this terrible discouragement I'm facing.  Happy disposition, dear, we've been so good since middle school, what happened? Please don't let this disease ruin our relationship. Please stay with me!


Some days, I feel almost completely normal with only slight fatigue or minor joint pain.  Others, I want someone to cover me head-to-toe in Band-Aids and read me stories to keep my mind off of things.  With your caring prayers and gushing affection, even Band-Aid days are manageable. For that, you are my heroes.


Goshdarnit, another long post.  I'll get better about writing decently short ones at some point, I promise.

All my Love,
~Melissa

Skeleton Bones and Creaking Tones

Friends, it's Friday - thank goodness!

      Yesterday was about fatigue and today is the other heavy hitter:  joint pain.

Why does Lyme make your joints hurt?  Because it's a stinky-no-good-rotten disease, that's why!  The science behind it, however, is a bit more science-y than that.  Here's an excerpt from WebMD that sums up a lot of what I've heard before: 
     "Chronic Lyme arthritis is a recurring form of joint inflammation caused by Lyme disease...a bacterial    infection... Symptoms of chronic Lyme arthritis include episodes of swelling, redness, and fluid build-up in one or more joints that lasts up to 6 months at a time... Some experts believe chronic Lyme arthritis is caused by an exaggerated response of the body's immune system."  [http://www.webmd.com/hw-popup/chronic-lyme-arthritis]

Do you see this x-ray of the hands?  Every place where two bones meet has the potential to swell up, stiffen, and cause me great amounts of pain - and that's just the hand!  The sheer number of joints in my hands and feet make them extremely susceptible to arthritic pain.  Then there are bigger joints, like the wrists and knees, that have more bony surface area and more natural joint fluid ("synovial fluid" if you're curious) to boil and bulge in agony.  Every freely movable joint in the body has this fluid and thus has the potential to be effected.

Creaking, groaning, bursting, this is the symptom that impersonates anger and rage in how it feels. My body is angry (at me? at Lyme disease? who knows).

 Some days, I'm just a little knee sore which is easily remedied with taking the elevator instead of the stairs..  Others, like Monday and Tuesday, I am so stiff and rusty-feeling that even a full dosage of painkiller doesn't dull all of the pain.  I often don't know how bad it is until I do something like stomp my foot or give a really enthusiastic high-five. Other days, I wake up feeling seemingly ancient bones waging war against each other with every new breath of air. Many days, taking more than 1 paragraph of class notes will cause excruciating pain in my right thumb and index finger.  Recently, I've had trouble driving more than 10 minutes because my right ankle with start roaring at me.  I've taken to wearing an ACE wrap on it all the time which helps, but it's no cure.

I continue to thrive off of your prayers and love.  <3
All my Love,
~Melissa

Leadblood - There's some stuff I just can't do

Hello friends!

     I am often asked about what Lyme disease is like.   I am no doctor, medicine woman, or trained professional when it comes to infectious diseases, but I am an expert in one area - me.  After refusing to listen to my body's desperate plea for attention early on, I've become an excellent bio-listener.  My fragile vessel will whimper, moan, groan, yelp, bawl, howl, snarl, sigh, gasp, and cry to tell me what I need or how I feel.

Fatigue - This is perhaps my most crippling symptom. A lot of sources say that Lyme will make you feel like you have the flue, just without the coughing and sneezing.  I find this to be a rather boring description, however accurate.  Here's some more creative descriptions for your understanding, dear. 

(  ^Me when fatigued. Picture not mine...thanks Google Images! )

     It's that feeling when you're alarm is going off in the morning, but you're not well rested and you fumble to hit the snooze.  Imagine that state of being for a moment.  Recall the lack of adequate blood flow to your brain to process everything, the weakness in your arms (arms that feel as heavy as iron rods), and the uncoordination of the fingers.  

     It's that feeling when you stand up too fast after sitting for a long time when the blood is rushing around, and you're completely lacking in strength.

     It's feeling as though something has changed the very blood in your veins into lead, heavy as it slushes from heart to limbs without giving power to the muscles that are too tired to move.

     Some days, it feels like that every single time I stand...and the feeling doesn't go away.  It is so heartbreaking for me on a bad fatigue day and be unable to sprint a few steps to catch up with friends in the hall, sing a whole song, take the stairs, stand up for rehearsal, go to meetings after a certain hour, or other simple tasks without burning out and withering. This summer, my friends wanted to go shopping and out on walks through downtown, but I couldn't. I knew it would use me up for the rest of the day.  All I could do was sit and watch old seasons of Smallville.  When I know there is something I absolutely need to do, I save my energy for that day to accomplish that task.  Often that means being vastly unproductive the rest of the day.  As you can imagine, this is making college life really, really difficult!

     Can't you just have another cup of coffee and move on?  Nope.  Caffeine only works up to a certain threshold (about 1.5 cups, or 2 cups of black tea).  After that it just makes me ADD and even more uncoordinated with slight tremors in the hands.  It has gotten the the point where my friends now know Lyme's as "Old Lady Syndrome" because between the joint pain and fatigue, I shuffle around like dear sweet great grandma when it gets really bad.  Joint pain, however, I'll post on another time.

All my love,

~Melissa.