The Climb

It seems a lifetime ago since I've written.  


My journey has since taken me to the mountains of new answers and hope, to the deepest valley's of deeper illness and despair, and to the quaint foothills where life seems to reside while trying to be content in all my circumstances.  The climbs have been difficult and many, the falls have been excruciating and hard, but I've no choice but to pick myself back up and try to climb again.  Someday, eventually, I will see that crest of good health, with the beautiful sight of a great future that will accompany it.


In the spring of 2011, I was given new energy for my climb.  Not 1, but several new diagnosis of real, concrete conditions.  After all, I'd always questioned the diagnosis of 'Chronic Fatigue Syndrome' and 'Fibromyalgia' as they were really only just names given to a mysterious condition in which nothing definitive could be found. These new conditions were all real and treatable!    


I demanded to see a Gastroenterologist for the stomach pains that persisted with my "CFS.'  An upper endoscopy was done and found polyps and inflammation.  Further tests were done to explain why.  A GET (gastric stomach emptying test) found I had a condition called GASTROPARESIS (delayed stomach emptying due to a partially paralyzed stomach.)   A hydrogen breath test found SIBO (small intestine bacterial overgrown), likely due to the slow digestion.  And, a CT scan found DIVERTICULOSIS (likely a result of the other conditions.)  


On a hunch, I referred myself to an endocrinologist.  After explaining my long history and symptoms in detail, plus a few simple blood tests, I was diagnosis with HASHIMOTO'S THYROIDISIS (an auto-immune thyroid condition).  


With meds to get my stomach working better, and more meds to kill the bacteria, watching what I ate, and meds to get my thyroid and pituitary glands working again as they should be, I was hopeful I'd be feeling better in no time.  I was hopeful that these were the keys to unlocking the energy I needed in climbing that mountain to good health.  


Days turned in to weeks.  My climb began slowly.  Weeks turned into months.  I started to slip backwards.  My digestion was working again.  But, my endocrinologist was struggling getting my thyroid levels corrected.  


By fall, 2011, what little progress I had made over the summer, was almost gone. Sadness, hope gone.  My endocrinologist told me that there was something more.  My journey seemed to be starting over once again.


In the meantime, my dad was treating for Lyme Disease.  He had gone through several years of similar symptoms and eventually was referred to a Lyme Literate MD (even though his Lyme tests came back negative from all the traditional tests).  She found he did in fact have Lyme through new, more sensitive testing.  My endo suggested I see this Lyme specialist as well (even though I had tested negative for Lyme many times over the years.)


Sept 2011: A visit to yet another specialist looking for new reasons to climb.  A Lyme Literate MD gave me a clinical diagnosis for LYME, BABESIA, and BARTONELLA (not one tick infection, but 3!). This diagnosis was sealed with some positive blood tests that followed, through a lab called IGeneX (that specializes in more thorough Lyme testing) that also found a 4th tick infection, ANAPLASMOSIS. 


I had, finally, after ALL THESE YEARS found, irrevocably, THE cause to all my health issues! Chronic Fatigue Syndrome and Fibromyalgia were misdiagnosis!  And, there is no doubt that the tick bacteria caused the Gastroparesis (from Lyme induced nerve damage) and Hashimoto's (one of many common auto-immune conditions caused from Lyme).  


I felt as if I had leapt up the mountain and was floating on a cloud!  I had answers, but the correct answers this time!  I was so eager to strap on those athletic shoes and run up that mountain.


Little did I know how hard this new climb would be.  Harder than ever before.  Little did I know, that treatments would make me much sicker before I ever got better.  Little did I know, this could take years.


2 months into my new climb, taking 400mg of doxycycline a day, I fell the hardest yet.  My new rock bottom.  I found myself in a frightening canyon of new horrifying and debilitating symptoms that left me bed ridden yet again. I was numb from the nose down, too weak to stand, walk or hold my head up for very long, gaging on my tongue, with severe full body tremors. My thoughts: Do I now have ALS too?  Am I going to die? 










   

My denial!

February, 2011 brought me back to a place I never hoped to be again.  Bed ridden.  Scared.  In great pain.  Weak.  Unable once again to be the wife, mother and woman I had been created for by my Almighty Father.   No choice but to head back to the doctor's in which I had given up on.  Needing some answers, needing some hope... needing...needing.  Needing help getting down the stairs.  Needing help doing any sort of household chore.  Needing help getting my children to all of their many activities while my husband worked (unfortunately nights and weekends).

I should really have seen it coming!  Why didn't I?  The entire month of January, I was so extremely exhausted.  No, not what 'normal folks' call exhaustion.  This kind is far different.  I lived those weeks feeling like a new mom who was woken in the middle of the night and then told to go to work all day, and then come home and cook dinner,  and then run the boys to hockey practice, and then run over to watch my daughters volleyball game and then come home at 10 at night and try to take care of the household chores... it felt like all on 2 hours sleep.  The saying, I'm so tired I can't see straight.  Well that was me!  It's true and it happens.  I was so exhausted, I literally couldn't walk straight either.  I felt as if I'd fall asleep during work.  I felt nauseous.  Irritable.  Crabby!  My poor family.

My life was too busy, too full to get sick again.  The day I almost collapsed and fainted at work shouldn't have come as a surprise to me.  But it did.  My husband picked me up, drove me home (I was unable to drive) and I collapsed into bed hoping I'd feel better after some rest.  Hours turned into days, days turned into a week.  I was unable to sit up without feeling dizzy and faint.  The inside of my head/ears felt like it was inflamed and ready to explode.  I slept probably 18+ hours a day.  Aches/pain,  ringing ears, heart palpitations,  night sweats, and the crazy rash on my face all back.   I was too ill to even take myself to the doctor.  I kept telling myself that I had a 'sinus infection.' (After all, I did have pressure in my head/ears, and dizziness, right?)  Thinking sleep and and cleaning out my sinuses would eventually help.  It didn't.  After a week, knowing I couldn't call in sick to work anymore without seeing a doctor, I drug myself into the clinic.  I told the doctor I had a sinus infection and needed antibiotics.  I left in tears when I was told that I did NOT have a sinus infection and wouldn't be given any meds.  

Another week went by with out any change.  I had a very hard time admitting what was really going on.   Desperate, I drug myself back to the clinic, this time to a different doctor.  This doctor would help me, right?  I confessed my history, hoping I wouldn't be treated like a crazy person.  I begged for help.  I prayed something could be found so that I could be treated.  I was pleasantly surprised to find a doctor that was willing to listen, and willing to look for answers.  She even seemed concerned.  She took enough blood to feed an army of vampires and assured me she'd find what was making me so ill.  She sent me home with a prescription for 60 mg of prednisone wanting to help me start to feel better right away.  I felt a glimmer of hope.

4 days later found me waiting in the doctor's office for the answer to what's been making me ill for so long.  Surely something would have shown up in the blood work with how severe my symptoms had been.  I was, instead, given the all too familiar computer print out on Chronic Fatigue Syndrome.  POP! The balloon of hope I felt, deflated!  I felt like I had been slapped in the face.  "Really? CFS, you came to that conclusion already!  No additional tests?  No specialists or more knowledgable doctors to be seen first?"  I thought.   "What about seeing a Rheumatologist?  What about further testing for celiac?   What about further testing for Lymes?'  I asked.   I continued to ask her if she heard the statistic on how many of the blood tests for celiac come back a false negative and that a better way to check was a biopsy.  She agreed with my statement.   She agreed to send me to a Rheumatologist, and agreed to send me to have the biopsy.   I also mentioned a non traditional Lyme's test that I knew was more accurate.  (My father has Lyme which was missed many times by the traditional tests and finally diagnosed my a not well known test called Igenx.)  I told her I'd like to take this test.  She was certainly agreeable.  Agreed to 'What ever 'I'D LIKE?' But who was the doctor? Was I supposed to come up with my own idea's on where to go from here?  Sure, she gave me a new prescription for Ritalin and claimed it would help my energy levels.  I wasn't given a pat on the back this time and told I would be sick a long time and there was nothing they could do.  But, it felt the same when she told me she'd 'be there for me on my journey of CFS.'   

I was back to where I never wanted to be!  Hopelessly ill and on my own.  

  

My Journey with Chronic Fatigue Syndrome: years later

My life was fruitful.  My life was full.  My life was busy.  My life was full of accomplishments.   My life was full of enjoyment.  I thought I had this whole "Chronic Fatigue Syndrome" thing under control.   While I never felt as if I was normal,  I was enjoying my life to the fullest.  While I still needed more sleep than the average person, I was able to function like the average person.  While I still had pain that would come and go, I was able to suppress it with Advil.  I was able to enjoy the good weeks, and still get through the bad.  I was living!

Much to my shock and horror,  I've recently had the worst relapse in 6 years!

My journey with Chronic Fatigue Syndrome: on my own

Hopelessness.  Despair.  Frustration.  Anger.  Emotions mixed with the physical body that seemed to be failing me.  Oh, everything they tested me for came back negative.  I wasn't dying.  I had nothing life-threatening or terminal.   I should have been thankful.  I wasn't!   I was faced with trying to live my life in a body that just wan't working for me.  I faced living my life in much pain, with much weakness, and with unexplainably strange symptoms each day.  

When I was given the pat of the back, and finally told, "You have Chronic Fatigue Syndrome, you are going to be sick for a long time,"  I was essentially told,   "You're on your own!"   The tests were done.  The searching to find the root cause of my ailments, over.  Yes, I took the anti-depressants they gave me.  Obviously, I WAS depressed.  Who wouldn't be?   For this was the life I had to look forward to.   A life of misery and pain.  A life in which I'd never have to energy to do the things I'd always enjoyed doing.    A life in which I may never be able to hold my kids in my lap without being in pain.  A life in which I would never ever be the wonderful wife, mother, or friend God created me to be.

The anti-depressents, for some reason, only seemed to exaggerate the symptoms I had of feeling faint or blacking out.  Unbelievable!  I couldn't even take those to help me feel better!  There was nothing...NOTHING left for me to do.  No one could help me.  I was in a pit of hopeless despair.  

Left on my own I started reading books and researching online everything I could possibly get my hands on about my condition.  I soon found that I certainly wasn't alone.  There were thousands of women out there who were just like me:  Desperately ill, frantic to find answers, willing to do just about anything- no ANYTHING, to feel even the slightest sense of normalcy.  

Over the next 2 years, the money I spent, the things I tried, most thought of as crazy.  But, I was desperate.  And, if the doctors weren't going to help me anymore, it was up to me to help myself.

I had never heard of 'holistic' medicine before this point in my life.  The more I researched CFIDS, the more I realized that this was the route most end up taking because they end up in the same boat as I was in.  Desperate to get your life back with no traditional doctor able or even willing to help anymore, this is where one ends up.  Sadly, I've even read and know about people who's doctors tried to refer them to psychiatrists, telling their patients in was all in their heads.  I know for certain, I am NOT a hypochondriac!  Nor are the thousands of others out there with my same condition.   We're desperate, yes.  Depressed, sometimes- wouldn't you be?  Frantic- likely.  But NOT crazy!  To finally get the diagnosis of "Chronic Fatigue Syndrome" means we're on our own.

I eventually found a holistic doctor who would see me.  I once again had the tiniest bit of hope in my life.  The money and sacrifices that I endured all for the sake of feeling better, again, most would think of as crazy.  Here's the crazy list of the things my new holistic doctor had me try over the next two years in an attempt to take control of my body and life:

*Acupuncture:  scary!  Having needles stuck in your body and someone performing what seemed to be voodoo over my body.  Turns out, however, once I learned the true scientific facts regarding energy in all matter (including ones body), it totally made sense.

*Colonics:  gross!  Who in their right mind would subject their body to that,  plus spend $75 for it, many times over.   Embarrassing.  But when you're desperate...

*Chelation Therapy:  Detoxing my body of heavy metals.

*Allergen free diet:  GLUTEN FREE, YEAST FREE, DAIRY FREE.   This was honestly the hardest thing I had done.  I ate that way for the better part of 2 years.  No red meat.  No wheat/ glutenous foods.  No dairy products.   No sweets/ sugars (even fruits that were high in sugars).   Very little processed foods.  Mainly white meats, rice and vegetables.

*Treatment for Candida:  This was included  in the difficult diet mentioned above, but included many expensive supplements to 'kill' the yeast that I was told was likely invading my body due to it being so sick.   And, even more expensive supplements to replace the good bacteria in my body.    The colonic's came into play here, to help flush out the 'bad' so I could replace it with the 'good.'

*Lots and lots of vitamins and herbal supplements!  I must have spent a fortune on them all.  Colostrum, fish oil,, magnesium, b vitamins, pregnenalone, dhea, special chinese herbs that my acupuncturist would mix up, holistic drops I'd put under my tongue, St Johns Wart, Ulta-Inflamx detox,  supplements to kill candida, acidophilus, candex, multi-vitimins  ....  plus many, many more.  It's hard to even remember them all.   I was desperate to put as many 'good things' as I could in to my body to support and help it into healing itself, whether or not I had found the 'root cause' of my illness.

I am pleased to say, that as the months and years went by, I slowly regained my strength, and the pain became less severe.  Eventually, the really strange and scary symptoms (numb limbs/ cheeks/ lips,  shaking episodes, fainting spells)  almost altogether disappeared.  I was slowly but surely getting by life back.   Was it all the 'holistic' things I did that helped?  Honestly, I'm not really sure?  It's possible that my body just healed and the reactions calmed over these years.  It's quite possible, however, that all I did actually aided and supported my body in calming and healing itself.

Was I ever 'normal' after finally being able to function in life again?  NO!   But this  'new normal' was far better than the misery I'd experience the previous despairingly hopeless, painful years of my near non-existant life.  To be honest, I've had my struggles in the 6 years after I've started to feel better.  I  had flares and minor set backs.  I was thankful that I had always been able to manage my relapses with plenty of sleep,  supplements, and learning to pace (set boundaries for) myself.   I may have needed 10 hours of sleep at night, it was better than the 15 hours plus naps that I had needed years earlier.  I may have needed several days of quiet after a day or two of business, but I was able to actually do things again that I enjoyed!  I could spend time with my husband.   I could spend time with my family and friends!  I could play with my children!  I could host a family get together.  I could even volunteer at church or help a friend.

   I will never forget the day when my 3 year old went to climb on my lap and stopped himself and asked, "Mommy do you hurt?"  He wanted to make sure he wouldn't hurt me if he climbed on my lap.  Wow!  This had been the only mommy he'd known his three short years of life!  With tears in my eyes, I was able to scoop him up in my arms, hold him tightly on my lap, and tell him, "No, mommy doesn't hurt quite like that anymore!"  =D

My Journey with Chronic Fatigue Syndrome: In the beginning

   I've always envied all the people around me that have had 'normal' lives.  The fact is, even when I was, I never really felt it!  I've always envied those women around me that seemed to be able to 'do it all.'  They were up early on Saturday's, and had the energy to play with their children, all while working full time and still keeping up with their homes and their lives.  

   Looking back, I really wonder how long I've had the condition that I have?  Is it something I was genetically predispose to acquire?  I should have almost seen it coming.  But who knew?  How was I supposed to know?!  

   In elementary school, I seemed to need far more sleep that most of the other kids my age.  I remember in Junior High, getting silly strange pains in my knees or my hands, wondering what I possibly did to injure them, but not knowing how. Then the pains would disappear as quickly as they started.  


   In High School, I definitely didn't have the energy my friends did.  I knew it, but certainly wouldn't admit it.  I'd come home at 3PM after school exhausted, didn't even play in any sports, and would barely be able to wake up from my daily naps to make it to my job at 5:30PM.  Looking back, I also now believe I had my very first CFIDS related 'episode' when I was a senior in high school.   The flu-like illness I had experienced was never found to be mono, or influenza, or strep, etc.  I recall how the doctors tried to tell my mom I was anorexic.  Crazy!  I had always eaten like a horse, even though I probably didn't weigh much more than 100 lbs.  I remember the strange rash I get on my face yet today when I relapse in my sysmtoms.  (Yes, I've been tested for lupus many times, always with negative results).  But, after a couple of weeks, I returned to the same normalcy I had always known, simply not as energetic as everyone around me!

   In my early twenties, after getting married, I recall feeling achey and sick to my stomach often upon finally retiring to bed after long days.  My poor husband!  Looking forward to snuggling in bed (<;) with his new wife at the end of a long day, only to find her not feeling well.  Something that was unexplainable and seemed almost inexcusable at the time.   In my mid-twenties, I began to actually feel very embarrassed about not being able to keep up with life like all the women around me.  I never felt as if I got enough sleep, always had a hard time waking up in the morning, and was always late to work.  I simply felt as if I wasn't the wife and grown woman I had always hoped to be.

  

   It wasn't until my 30th year of life, during my pregnancy with my youngest,  that I began to question my obgyn doctor.   "What the heck is wrong with me!?"  There was the explanation that I was a pregnant mother with two other young children, of course I'd be tired.   "Not like this!," I'd say and think, but the doctor just never understood what I was trying to explain.  Now, I felt I couldn't be the mother I had always desired to be. 

   After my son was born, I again developed that crazy rash, the worst I had ever seen, on my face.  Within the week, I began to feel very feverish and ill.  I experienced pain in my kidney areas as well.  The doctor gave me a course of antibiotics, explaining that I likely had a bladder infection due to the delivery, episiotomy, and stitches from child birth.  Really not sure if he ever even tested me for this, I was happy for the drugs and an explanation.  I was eager to get on with my life and get back to taking care of my new sweet baby and family.  I was also given some topical acne cream, told the rash was likely hormone related adult acne.

   Throughout the next few months, the rash got worse, not better.  I was then told I possibly had allergies.  After switching laundry detergents and watching what I ate, the rash persisted.  Eventually I was told I must have a condition called Rosacea, and given topical medication to treat it.  Much to my disappointment, this also didn't to help any.  I was unable to fix the new ugliness that graced my face!

   Within a couple months time, I started experiencing joint pain.  Oddly, it started in only one knee and a knuckle.  I didn't think much of it, until, a rash started spreading over my entire body after anytime spent in the sun.  Soon again, the flu-like symptoms we're back.  This time, however, they hit me like a mac truck!  I was found to have the epstein barr virus in my bloodwork, thus told I had mononucleosis.  An explanation, maybe?  Unfortunately, this seemed to be the catalyst that sent my body and health spiraling out of control for the next 3 years!

   With in the month I felt like I was being poisoned, slowly and steadily feeling more and more ill.  I felt like I was being cripled, my joint pain seemed to be increasing in intensity week after with pain spreading to every square inch of my body.  It hurt to wear shoes.  My feet hurt under the weight of my bedsheets.  I slept 15 hours a night, yet still needed naps.  I became too weak and fatigued to do simple tasks such as showering without having to rest afterwards.  My body would shake and quiver as if I had a very high fever, but my body temperature would be lower than normal.  Sometimes my limbs, checks and lips would go numb.  Other times my hands would cramp so badly they'd even stay in the position of holding a cup, even after I put it down.  I had heart palpitations.  My body felt so heavy and I'd often feel faint after standing too long, moving too fast or doing too much (which wasn't really much at all.)  I had head aches more severe than I'd ever experienced before.  The light from outside, even on a cloudy day, hurt my eyes.  My body hurt so badly that my children were unable to sit on mommy's lap anymore.  "What's wrong with me?" I thought!  "Am I dying? Help!"

   I was desperately ill.  For the next year and a half, test after test, referral after referral, doctor after doctor, specialist after specialist, couldn't seem to find a positive result to what could be causing my unrelenting illness.  I was tested for lupus, lyme's disease, multiple sclerosis, rheumatoid arthritis, thyroid and hormonal imbalances, hepatitis, many infectious diseases, food allergies, gastero-intestinal issues, etc.  I was desperate to get my life back, but no one could help!  I still remember, like it was yesterday (though it was nearly 10 years ago!), the day my doctor literally patted me on the back with one hand, grabbed my shoulder with her other hand, and told me, "I'm sorry, but you have Chronic Fatigue Syndrome.  You are going to be sick for a very long time. I'm sorry, but there's nothing more we can do for you."  (I was then given some anti-depressants to help me cope.)  My rock bottom... I felt utterly and completely hopeless!