No One Is Immune

No one is immune to catching Lyme.

Remember to use repellent.
Check for ticks.
If infected seek immediate help even if you do not develop the "bull's eye rash" associated with Lyme.
(I never got a rash)
Do not take no for an answer.  This is your health, your life.

New Year New Woes

I'm tired this morning so I'm not sure how much I'll be able to write.  When I get fatigued my concentration levels plummet.  Nevertheless the show must go on.  

I don't normally start my new year with resolutions like everyone else.  I believe in setting short-term goals all year long.  It helps make them a little more obtainable. Goals weren't even on my list for this year at all though. Having a productive day was a goal enough.  By January I was on yet another antibiotic.  My 4th to be on now.  The visits to the lab for blood work was becoming so routine that the person drawing my blood and I would talk about our families and how everyone was doing.    Doctor's visits were growing mundane.  I had come to realize that what I had thought would have been soon and over with in a matter of 6 months was going to be much longer.  Doc told me at the least another year.  All the antibiotics had taken a toll on my gut.  It had gotten to where I could not eat because of the pain and when you kill the bad bacteria when on an antibiotic you are killing the good as well.  My stomach was a constant burn and now in addition to the antibiotic and the arthritis medication I was now on something for a yeast infection in my stomach! The doctor was not fond of the fact that I couldn't eat or sleep because of the pain.  She also wasn't too excited to find that I had lost over 20 lbs in a month.  (I didn't see the problem there.)  She sent me to a gastroenterologist.  The GI doc thought that it was possible I had a simple food allergy going on.  I had also suffered from acid reflux for years.  She ordered a colonoscopy and endoscopy.  It was more work preparing for the procedure than the time it took to perform the procedure.  Man that drink was NASTY!  I was done in a matter of 10-15 mins and then recovery and then on my way home.  Results.... severe erosion of the esophagus and stomach lining, deep ulcers, hiatal hernia, and spastic colon, and candida (yeast over-growth) WOW.  Add this all to the list of other stuff.  Time now for a change in diet.

This diet is strict and I still attempt to follow it in moderation.  No spicy foods, no caffeine, acidic foods such as tomato, no breads, pasta, rice, no sugar, no alcohol. Let's see, that leaves me green foods, and fruits, and some meats.  Well, I'm happy to announce I have cut super duper back on the alcohol (mainly because I cannot tolerate it anymore) sugar was easy, pasta and breads were surprisingly easy, but caffeine? Come on.  I have started limiting my intake to a cup of coffee about 4-5 times a week.

I started to get relief when changing all of those things.  Heartburn at 1AM keeping me up all night started to go away.  My stomach eventually started feeling normal again. I knew I was going to have to change my lifestyle of rich foods, fast foods, and processed foods for the rest of my life due to the damage already done.

I started feeling more and more helpless.  I hadn't had a good herx in a few weeks.  The good days and bad days were all starting to run together.  I wanted to work out and I tried on occasion when my knees would allow it.  I even started pursuing a dream of mine I'd had for years.  Soap making.  I had baseball season coming up for the boys, and a spring break trip to make in Missouri.  I started growing very numb to the fact I was sick and there was a slow festering of frustration lurking it's ugly head around the corner. I wanted to give up. This was becoming no way to live. 

Holiday Hangover

Thanksgiving came and went, emotions settled down for the time being and it was now time to focus on Christmas.  I usually cannot CANNOT wait to decorate for Christmas.  It is traditionally, for me, the day after Thanksgiving.  That's right.  While everyone else is waking and shopping and standing in mad lines I am busy getting my Clark Griswold on.  This year I was in bed.  I shopped on Black Friday for only the second time ever.....from my bed.  I know I told you I spent 2 weeks stuck in bed already. When that time was up  I was ready to get out of my room and do some moving. It was crazy how much muscle I lost!  I was incredibly weak. One of my first outings was to the grocery store.  The kitchen and pantry really needed a mother's lovin after me being out of commission for so long.  My husband went with me.  I did good.  Making it all the way to the check out line before I gave out.  My body was locking up. Knees, hands, motor skills, speech, and this feeling that I get where it feels like the air is being squeezed out of my lungs with every breath I take.

When I was pregnant, I had this fear of my water breaking in public.  I just knew with every forceful kick that it was going to happen and I was going to be so humiliated and left feeling obligated to pick up the carpet cleaning bill somewhere. I'm sure you ladies reading will know exactly what I am speaking of.  Holla.
Well, not like celebration holla.  Just like a Word Up.
I have that fear all over again, but this time it is with shakes, with my speech that so easily becomes slurred, the absent mindedness.  I'm scared I'm going to be mistaken for the town drunk or the town junkie.  See, when I am having a "moment" it would be easy to compare me to such.  My brain is telling me to do one thing, but my body is doing something completely different.

Back to Christmas time.  I made it to the kids functions. I even managed to take some pretty snazzy pics of them for our Christmas cards.  If I know I'm going to be busy I will allow myself downtime. You may see me walking around at school, at the ball fields, at the store.  You may even see me cleaning my car, grocery shopping, or pulling weeds.  It would probably be easy for you to even pass judgment on me and say that I look well and that I don't look sick.  The battle is on the inside of my body.  I do what I can when I can for as long as I can.  I am learning to balance rest and activity, but during the Holiday months I was still trying to understand this lesson.   My tree was in my living room, undecorated until a week and half away from Christmas.  That was a long time for me. I honestly cannot even remember decorating the house or even shopping.  Baked goodies didn't get made this year.  No peanut brittle, no pretzels dipped in chocolate, no sugar cookies. Not here.  What I do remember though was painting wine glasses.

For several years I baked and decorated cakes.  I enjoyed it so much.  I've always liked being artsy and creative.  As I fell more and more ill I was also becoming more and more busy and I was not able to keep up.  My hands and back and legs would hurt too bad.  Believe it or not it takes strength to do cakes.  It also take a mental toll due to the concentration.  I just could not do it any more.  I slowly faded myself out only to do the occasional cake here and there now.  My kids do not even get my decorated cakes.  Kroger cupcakes it is these days.  Oh and there is the always delicious Baskin Robbins cake. Jussssst in case anyone ever needed to know that for any reason.

Painting glasses was so enjoyable due to the fact I was able to decorate and expel some of my creativity without the pain.  We retreated to the deer lease for a weekend where I painted the whole time while watching red birds.  I stayed just enough busy doing so until the hand and brain shaking started to get worse.  Now, I don't know how many of you know this, but you have to have a steady hand to paint, just like decorating a cake.  It's not rocket science.  It's simple math.
They call it brain shivers.  The shaking I can feel all the time.  Like a constant vibration.  Then there are the times where I shake and twitch and it's noticeable.  I will sometimes in public sit on my hands when it starts. For the life of me, I cannot remember Christmas Day, (begining of Alzheimer's)  and New Years was spent at home with the kids waking me up just 5 minutes before the countdown. Whew. Things by this time are really starting to catch up with me. It is so frustrating to have chunks of memory just vanish.  I do remember that I had to quit the glasses.  It was okay.  I had bigger plans.

Celebrities With Lyme

Here is a short list of well known's who have battled or are battling Lyme in no particular order.

Richard Gere-actor
Ben Stiller-actor
Christy Brinkley-model
Christy Turlington-model
Daryl Hall-singer
Former President George W Bush
David Letterman-comedian/host
Michael J Fox-actor (Parkinson's a result of Lyme)
Alice Walker-author
Nina Cherry-singer
Amy Tan-author
Jamie Lynn Sigler-actress
Parker Posey-actress
Ben Petrick-major league baseball player
David Mennes-MMA fighter
Joe Meeko-Mr USA/Mr Universe (passed at the age of 48 after his battle with Lyme)

...and drum roll.....the man who pushes the Earth away he doesn't do push-ups-Chuck Norris
Guess a tick was his kryptonite.

The Fat Tongue

There are days where I have the fat tongue.  You know, like you've just come out of surgery and are on a Demerol high kinda of tongue.  What's really cool (insert sarcasm look here) is when you are trying to have a conversation and you smooth forget simple words.  Just flat out go blank.
I recently have made a friend who has Lyme. I will talk more about her in a later entry.  She and I went to lunch one day and we were gone quite a while.  Mainly because I was so excited to find out I wasn't alone. When I got back home my daughter asked what took me so long.  To which I replied, "You know how sometimes when I'm talking to y'all I go blank and can't get my words out in a timely manner? Now imagine two people like that holding a conversation."

I feel like that scene from Bruce Almighty when Dave Carell's character as news anchor is being taken over. It can be quite humorous at times.

What's There To Be Thankful About

It's 3AM and I'm having chest spasms, so no sleep for the infected tonight.

Taking oral antibiotics is all I have experienced thus far, and when I first started I was okay with that.  IV antibiotics are killer.

Our home consist of 5 kids, a police officer husband who works straight nights and 4-5 side jobs on any given week, did I mention 5 kids?  All which are involved in at least 2 things.  Grades ranging from 9th down to 4th.  Me, the homemaker, peacemaker, chef, chauffeur, school bus, personal shopper, nurse, mediator, etc......Not a lot of time left in between to get better.  No real downtime.  Me laid up means sacrificing time with my family with my friends.  Most importantly, with my children.  I had gotten to where I would push push push through everything and then rest when no one was looking or around.  I've always been a very planned-out meticulous gal, and I was loosing control of that too.

Flagyl.  A 2week antibiotic that will leave a lymie a hot mess. (As if we needed any help with that.)
 ABS-SOOO_LOOT-ly no alcohol.  Severe reaction that will land you in an ER.  Not even any in your food or mouthwash.

"What? You can't go two weeks holding onto the wagon?" you ask.
Yes, yes I can, but this was Thanksgiving.  This was family, and me cooking, Macy's parade in the background, some wine with the parents.  Good times.  Those that know me, know I really like to cook and entertain, and this year I couldn't do anything except lay for 2 weeks.

Flagyl is a cyst-buster.  I told you last time about the 3 forms.  (If you missed it, go back and read the post before this one for better understanding.) Cyst form doesn't hang around long and so when and if you happen to catch that cycle it has to be treated full hands on.

Within hours of taking I started herxing.  My legs locked up on me. I needed help just to make it a few simple yards to the restroom.  I had to lay in a hot tub of water to get muscle relief and needed help getting in and out.  I could not lift myself up.  The crying, or better yet, the wailing.  I had already been placed on arthritis medication weeks before this started for the joint pain.  (Yes, I'm still on.  I have arthritis now.  One of the many results from having this disease.) This part is hard for me to talk about.  Really hard.  I'm a prideful person, and I hide a lot of what happens here at the house when I'm having a bad day.  See, you will probably never see it.  I still wear my smile, push through to do what must be done for my family, keep a clean home, a nice yard. I am at my children's functions and sporting events. You will even look at me and pass judgement saying to yourself, "She looks just fine.  I don't understand how she can be so sick."  Or other words similar to that.  You will talk about me behind my back. Then there are those who will just never understand or even take the time to.  None of that matters.  That is your battle.  This is mine.

Here comes the ugly.  (pausing to regain composure so I can continue typing)
I got so bad that my husband had to go remove the potty from his fathers boat and make me a place beside the bed just in case I couldn't make it  4 yards to the bathroom.  Pride officially stripped from me.
My drinking glasses did and sometimes still do had to have a straw on them and be in plastic.  The weight of a simple glass was just to much to lift.

How was I going to celebrate my favorite holiday?  Cooking was out of the picture.  I can tell you exactly how I celebrated it.  Hiding tears.  I fully expected my parents and brother's family to at least come here.  Bring it here.  What did I get?  I got an invite, that if I felt up to it I was welcomed to come there.  "There" isn't that far away.  It is only about a 15 min drive from my house.  So, why did I have to go there??? Why didn't they want me around?  Why didn't they care?  Have I disappointed my parents again? Were they ashamed of me? What didn't they get about the fact that I was sick and could not do for myself or for anyone? Did they think I was faking this whole thing?  I couldn't go take a piss without help for crying out loud!  I was so hurt.  So shunned.

Well, I'm good at putting on my mommy mask.  Mom's know what I'm talking about.  My husband went to our local BBQ joint and got us a smoked turkey, my girls learned to cook a few side dishes while I sat in a chair and gave instruction.  I reclined on my couch and we all ate in the living room picnic style.  It ended up be such an intimate Thanksgiving for the 7 of us.  My husband and kids rallied around me. We watched the UT vs A&M football game.  (We are a family divided.)  We made memories and they gave me joy.  I still went to bed that night feeling sorry for myself.  I laid there and cried as the holiday came to a close.  I waited and waited for maybe at least a phone call or a text wishing me a Happy Thanksgiving or a "We're going to come bring pie over and visit." from my parents.  I got nothing.  I was hurt deeply.  I didn't understand what I did to deserve it.  I was the elephant in the room no one wanted to talk about.  As long as I was out of sight no one had to deal with it.  They were in denial and it was trickling down onto me.  I didn't need the added stress or depression on top of everything else.  I found myself back on the forums again.  Reading posts from others who spent their Thanksgiving very similar to mine.

I tried to understand.  I tried to wrap my mind around it all.  I needed my family.  They will be my life raft for years to come.  I don't remember exactly how or why, but my parents eventually started talking more about my disease with me.  Dad asks very little because he gets choked up.  Mom has thrown herself into understanding it all the best she can.  As hurt as I was by their actions, they were not to blame.  Ignorance was to blame.  It took me a bit to finally get it, but we come from a family of -if you don't talk about it, it will go away. (hence the elephant)  It was their way of doing just that and with me hiding what was really happening what else should I have expected?  The more I talked about it, the more I made them understand, the more they read, the more they heard, the more they realized it wasn't going to just go away.  I was just as wrong for not giving them the ugly truth of it all.  I was sugar coating because of my pride.  There is still so much that no one has seen except my husband.  Times where I can't even speak and all he can do is hold my hand while I seizure.  Times where we speak with our eyes or a nod.

I now have such a supportive family.  Supportive friends.  My aunt even is constantly sharing whatever she hears or sees.  I have a rarity as a person infected with Lyme. It's such a scary and and unknown disease so it is easier for everyone to not indulge in becoming more knowledgeable on the topic and as un-thankful as I was last Thanksgiving, I've never been more thankful for how far we all have come.

Lights will guide you home.

And ignite your bones

I will try

To fix you

I'm Such A Freak

When one is being treated for Lyme, they are on several different antibiotics.  What you may be on this month may not be what you are on the next and so on.  Antibiotics attack differently.  No two are alike.
Lyme Disease is caused by a bacteria called borrelia burgdorferi. It disguises itself in 3 forms. A spirochete is in a corkscrew shape.  It digs and screws itself into the organs, muscles, bones, tissue.  I guess you can say I've been screwed by Lyme.
In cyst form it is dormant.  It does not move.  It remains still and can survive antibiotics.  It will convert back to a spirochete when conditions are favorable.
In cell-wall-deficient (CWD) it will actually take Vitamin D from the body and convert it into an immunosuppressive (suppressing the immune) and will clump together forming colonies making it a very very tough battle for the antibiotics.
All 3 must be treated differently.  One can die, but the other is strong.  It is forever changing its form.  Hiding and weaving in and out of the body.
Different antibiotics are meant for different phases.

When I started treatment I anticipated getting "sick to get better." What I didn't expect was to lose control.  During a round of treatment you have a large bacterial die-off called a herxheimer reaction or herx for short.  Now I always felt like poo, but I had no clue what was about to meet me.  With there being so little knowledge and not personally knowing anyone who had been through what I was about to go through, there was no way for me to really prepare.  Sure I read, but when your body starts doing these uncontrollable things shortly into a round of meds you start to feel alien.

Ever had a deep tissue massage and they tell you to make sure you drink plenty of water afterwards?  They do that because the massage breaks up and releases toxins in the body and it's important for you to flush them out.  If you don't you can end up pretty ill and sore the next day wishing for another massage.  The same when you sit in a sauna.  You sweat out all the nasty and if you do not rinse it, again, you may grow to feel ill.

Well, a herx is like the same thing, but on a much larger unimaginable level. Just hours into me taking my first dose I was already weak.  I slept so hard for hours almost a few days.  My husband was constantly checking on me just to make sure I was breathing.  Pain was intensified and food......one minute it was down, the next it was up. Shaking.  Not like chills.  Like an earthquake. I started having Parkinson's-like shakes. My leg would kick uncontrollably so hard it was left sore.  I cried so hard and immediately fell into a depression.  The party was over.  My mom would call me everyday wanting to know if I felt better.  If by chance I was having a better day it was , "Good, maybe it's working and you'll be better in no time."
I grew so very frustrated with hearing this from her.  I knew I had a long road ahead of me and I wasn't going to GET better.  My friends tried to understand.  My brother and my dad, well, it was like I was the big  elephant in the room.  You know, pretend it's not there and it will go away. I was guilty of doing the same thing though with my kids.  I hid them from it.  I hid.

As if I didn't feel alone before I started treating my Lyme.......

I was a freak.  I didn't want ANYONE seeing me or being around me.  I stayed in my room.  The herx eventually calmed down.  They come in cycles.  Usually a 4-6 week times.  As the bacteria crosses the blood-brain barrier  the symptoms are more and more prevalent.  The shaking and loss of words and just feeling stupid is in full force.

I stayed on my first antibiotic for 6 weeks.  I grew used to some of the side affect, learning to accept them just like I had the pain I had for all the years prior to.

My next round of antibiotics I didn't have much change.  As a matter of fact, I remember being able to function a little better.  The main pain I experienced during this time was back pain.  Deep tissue pain. Then came Thanksgiving.

I Have Lyme. Now What?

We all are guilty of it.  Finding out we are sick, thinking we are sick, being told by the doctor "worse case scenario" or watching a TV show that showcases a rare and unusual disease.  What do we do?  Go straight to the Internet.  Wikipedia, WebMD symptom checker, Google.  Whatever your guilty pleasure for self diagnosis is.  Mine is the forums.

After my Lyme Titer, the next step was to have a Western Blot done.  It's the only way to get a "confirmed case."  On a Western Blot it looks for bands.  What I mean is for example, when you get the chicken pox your body goes into attack mode.  Natural antibodies are produced.  This is the case with strains of the flu.  Once those antibodies have made them self known they will show up in the blood as having once fought an infection thus keeping you from getting that infection again. It's like a "antibody blah blah blah was here on whatever date."  So, while it is possible to get the flu many times during your lifetime, you are experiencing a different flu probably each time.  This is why the medicines change.  When our body doesn't naturally produce the antibody, then an antibiotic is taken to bring it out and make it fight.

When your body is first infected with Lyme antibodies come out to war.  Like in the movie Rudy, they fight!fight!fight!.  Sadly they don't win win win without help.  Unless it's caught early (and this is even debatable) they get tired of fighting and eventually give up.  They start to think that the infection isn't a foreign invasion but belongs in the body and they let it start taking over.

On a Western Blot according to the CDC there must be 3 bands show up.  Meaning certain different antibodies came to war.  This is fine and good for the person who was just infected, but for the person who's little soldiers have gone dormant..........thrown up the white flag.......

I had two Western Blots performed and both times I got a negative test. I only had one one band show up.   The titer was positive, the one band I had show up was igm 23.  Now this doesn't mean much to you, but for me even though the CDC was not willing to recognize my positive confirmation, it was a positive.  There are some bands that can show that may mean other infection not specific to Lyme thus giving a false positive, but for the igm 23 it is Lyme specific meaning. I was positive.  Now I had to find someone to treat me.  Easy you say? A doctor wasn't going to touch me unless I had a state and CDC confirmed case.  It's just not that simple.

Lyme Disease is a controversial disease to treat.  It is believed it was accidentally released from a place that houses infectious diseases and diseases of bio-warfare. UTMB in Galveston has a facility like this.  This one was off the east coast on an island by Old Lyme, Connecticut.  This is how it's name came to be.  The east coast has a higher populous of infected than any other area in the US.  I'm gonna go fast here so keep up or read slow.

The only real known treatment for Lyme is long-term high-dose antibiotics.  It is a powerful bacterial infection that is spreading faster than HIV/AIDS.  The antibiotics have to continuously fight. When you have had Lyme for so long the body has stopped fighting, you must take these antibiotics.  Average precaution when have been bitten by a tick is to watch the bite site and your symptoms for 30 days. People, by then it has invaded and it too late. Because of the long term treatment and it's no real cure (there isn't one) insurance companies do not always want to pay for the hundreds of thousands of dollars.  Doctors do not want to treat  because the insurance companies do not want to pay.  Government backs them on this. (until recently, laws have been changing even right here in Texas) Government back them because "they made a mistake".  So, doctors started loosing their licence to practice.  They had to go into hiding.  You can't just look at your provider handbook or go to findadoctor.com and look up doctor to treat Lyme.  As a matter of fact, the doctors that do you can't just call them up and make an appointment for your Lyme.

I'm going to attach a clip to a documentary at the end of my post.  I hope you take the time to watch it.  It can explain it all much better than I can.  If you have Hulu or Netflix you can watch the whole screening. I encourage to you to watch the whole story.  It was here I sent my friends and family to when I was first diagnosed.

So, now I have to find a doc to treat me, but have no where to go.  No one to turn to.  I'm alone.  All alone. I felt like everywhere I went people looked at me like I was a leper.  Yes, just my own paranoia.  But I was marked.  As excited as I was to finally find out what was wrong, I quickly realized and told my husband that it would have been easier to have been told I had MS, because at least I could have found treatment and doctors willing to help me.  Even when first diagnosed with fibromyalgia, I didn't have to take a test to prove I had it.  They just  gave me a pill.  There was something that couldn't be proven, yet doctors are willing to treat it everyday.  But something that could be proven, no one wants to help.  Such a hopeless feeling.  I was already ready to give up.

Then I found the forums. Then we found doctors willing to treat.  In New York, Missouri, California......no one in Texas. Long story short, I was put into contact with people involved with the Texas Lyme Association.  They placed me with a doctor in Houston. We had almost booked a ticket to New York when  I got the phone call about the doc just an hour away.

So she started me on oral antibiotics.  Now, when you have Lyme and the immune has been suppressed and is shot like mine is, you have to take these antibiotics to wake up the antibodies.  As they wake up the war is back on and this time its a lot more intense.  It's like full blown flu times 10.  As the body wakes up the bands start showing in the blood work.  Now I had a positive CDC confirmed case.  It was officially official.  What started off as 1 sleepy little band turned into 7 over a few months.  With Lyme you have to get sick to get better, much like a cancer patient going through chemo.  Remember in my first post when I told you to make note of me always coming home sick from the hospital? I was being given high doses of IV antibiotics as everyone gets when they're in the hospital.  My body was having a reaction to them in a positive way.  So much was starting to finally make sense and I just knew I would have this thing licked in no time and a few months of being knocked off my feet was gonna be worth  it.

My Story...The Begining

Hi, I'm Adrienne and I have CLD (chronic lyme disease) and this is my story.
A year ago I was diagnosed with a disease that will soon become a world-wide epidemic.
I have suffered for many years with chronic pain.  Pain in my muscles, joints, headaches, stinging-blurry vision, lock-jaw, fatigue, insomnia, painful feet, twitches, brain-fog, and now the incapability to maintain a core body temperature above 97.1.

Now, I don't have a Delorean or any other time machine handy, so we're going to get elementary here and use our imaginations while I take you back in time with me 16 years ago. It was church camp in Oklahoma at Robber's Cave State Park,  First time I ever remember sleeping somewhere without AC.  Normally the boys and girls cabins were closer to each other.  This was the year we all complained because the boys cabins were actually a few miles away and everyday when we had chapel or other co-ed activities they had to be bussed in to us.  That, the long drive, and the snack bar is about all I can remember. Oh and a tick.  At the time I had no idea what a tick was, what it looked like, or what it did. Being from the Galveston, TX area, there was no need for education in that department.  As a matter of fact, I though it was a new mole/freckle and I actually let it backpack around on me for about 2 weeks before I started picking at it and realized it was a bug.  I was grossed out!  I picked it, threw it away and never mentioned anything about it.

Now, I wasn't a sickly child, but when I did get sick, I got sick.  Even as an adult in my 20's.  The common cold for me was 3 weeks of misery that had usually turned into strep, bronchitis, or a horrible flu. I had become pregnant with my first child when I was 19 and had a few complications with pre-term contractions and thinning.  He was more than healthy at birth being two weeks late and 8.5 lbs. I came home sick from the hospital. (pay attention to this part because it will show up again  and there is reason why I'm mentioning this) When my son was a year old, I was again pregnant. This one was trapped in my tubes and I was not able to carry.   By the end of that year (now 22) I was pregnant again. When I was in my 20th week with her I started having contractions and was told that I would lose her if I had her.  I had extremely low amniotic fluid and spent many MANY days in the hospital with nothing to do but lay there with fluid being pumped into my IV.  The doctors were confused as to why I couldn't maintain healthy fluid levels.  I had no leakage.  Baby was growing at a healthy rate.  As a matter of fact, my OBGYN even called a specialist in Washington and he had said he only knew of two other cases like that and had no answers.  We were able to hold out on delivering her until she was barely 38 weeks.  Another healthy blessing she was! (came home from the hospital with a fever that I had for about two weeks)
With the complications of child birth and the risks, I decided that God blessed me with two children and I decided to have no more, having my tubes tied.

I was increasingly growing more fatigued.  I figured it was keeping up with a house, a job a 2 1/2 year old and a newborn.  Anyone would be tired.  I started getting heart palpitations.  I was only 24.  Stress maybe?  Too much caffeine?  Heart monitor, EKG, heart ultra-sound all okay.

Swollen, very red feet that would turn purple in an instant.  Too much time on my feet?
Visited doctor, was told I was depressed.

Sickest I had been in years was when I was 25.  I remember being so miserable, but not resting.
Had EEG for possible frontal lobe epilepsy from an accident I had when I was 17.  Results were inconclusive because my jaw wouldn't relax.

By this time I'm starting to get a little discouraged and started to think maybe I'm nuts.

While all this was going on I was having horrible menstrual cycles, never normal, and tons of pelvic pain.
After having an ultrasound, it was confirmed that I had Adenomyosis.  Endometriosis that not only grows on the lining of the uterus, but it will grow on the outside and start to attach itself to organs.  Ewe. Right?

I had it removed and was told that it would buy me a few years, but eventually it would call for a hysterectomy.  The day I came home from the hospital (with a small fever and very low blood pressure) my grandfather passed. The healing process was long.  Between the stress on my body and the stress on my heart.

I don't know if I was "healthy" during that time or I had just grown used to the aches and the pains, but I wasn't as sickly and my lady pain had subsided somewhat.  I remember finding it very difficult to stay focused.  I had a hard time keeping up with tasks and often felt dis complacent or discombobulated.

When I was 29 I went through my divorce.  Now, of ALL the stresses I had ever had up till this time, this was the mother load. I got sick. Real sick. Had to be carried to the hospital sick. Had to have my hair held back for me sick.  Lost over 20lbs in a month sick.  I couldn't eat a thing without it burning and it coming right back up.  I was a single mom trying to work by watching kids out of my house.  I remember just crying in pain, but I had to make a living so I could make what was barely ends meet.  I didn't ever think I'd get better during that time.

 Then I lost my period.  Just went away.  The pelvic pain came back, the cramps were there and I'm quite sure if you ask anyone the PMS was there.

Breast ultrasound-fibrocystic disease

High Cholesterol at a healthy weight with a healthy diet and moderate exercise.

Heartburn and acid reflux like a volcano.

We were traveling home from our friend's in Dallas when we were just our side of downtown Houston and I started freaking out.  Everything was going black on me and my whole entire body started to tingle.  I had my now husband rush me to the ER where they did and EKG and a full work-up.  My potassium levels were deathly low and my liver enzymes were out of complete whack.  It was advised that I visit my PCP.
She referred me to a rheumatologist.  He diagnosed me with fibromyalgia.

We felt pretty good that we had answers.  I saw him for over a year.  I still wasn't feeling my best, but I had just come to realize I never would ever again, and I learned to live with it.

Remarried-Happy Time

By the time I was 31 I was going through a total abdominal hysterectomy.  I had severe endometriosis and cysts.  (Came home from the hospital with a fever.)

My pain continued to get worse.  Daily headaches joined the club.  Something just wasn't right and my husband insisted that I find out. My rheumatologist explained to me that I was not a typical fibro patient and with my increasing headaches, neck pain, and light sensitivity I seek help from a neurologist.

Now we're a bit freaked.  He originally rules it as aura migraines but wants to take a look by doing an MRI and with my increasing muscle pain (always felt like I had the flu) he even suggested a myalgia test and a possible muscle biopsy.

No brain tumor. Whew. He said I had markings on my brain.
The night before I was to see him for a scheduled appointment, I was going through my email and I had come across a newsletter that I was still receiving about the Fibro.  It mentioned that they are finding a link between Lyme disease and Fibro. Okay, I'll bite, what's Lyme disease?  I had heard of it before, but never really thought about.  People around here don't get it.  Doctors don't seem too concerned about it.  I probably didn't have it.

It's contracted through a tick. I had a flashback.  I had a tick make me it's home!
I kept on reading.  onto the symptoms.
*flu like symptoms that wax and wane
*increased pain during stress
*reddening of the palms or sous of feet
*tingling sensation
*fibrocystic breast disease
*painful skin-sensitive to the touch
*persistent fatigue
*insomnia (difficulty staying asleep)
*being awakened by severe pain at night
*palpitations-chest pain
*air hunger-can't quite catch your breath at times
*reflux-heartburn
*stomach pain
*swollen lymph nodes
*decreased energy
*inflammation
*body temperature below 98.6 oF
*night sweats
*chills
*over-heating in the body
*arthritis
*creaking and popping joints
*joint pain
*bone pain (mainly in the shin)
*muscle pain and weakness
*mini blackouts
*tremors, shaking, jerking, twitching
*vertigo
*brain fog, difficulty processing, multi-tasking, etc
*slurring (fat tongue)
*disorientation
*endometriosis, severe pelvic pain
*reproduction problems
*headaches
*neck pain
*ringing ears
*light sensitivity and sharp pain behind eyes
 and this isn't all.  This is just some of what I experience, there is more.

(Lyme mimics diseases such as, Alzheimer's, ALS, Anxiety, Arthritis, Bells Palsy, Chronic Fatigue Syndrome, Chron's, Fibromyalgia, Heart Disorders, Hypoglycemia, IBS, Lupus, MS, Parkinson's, Stroke, TMJ, and so much more. Imagine having a little bit of just the above in your body.)

So, I ask the neuro for a Lyme Titer. "Sure." he says "But you don't have Lyme"
Two weeks later, "You must be on to something because your test came back positive." This was just the beginning of a very long and painful process.  A process full of joy that we finally had an answer, to frustration in the difficulty to get a proper diagnosis.  The difficulties in finding a doctor that treats Lyme and the money spent in doing so.  The hurt in knowing you will never be 100% again, but the realization that life is precious.
The questions that family and friends ask because they don't understand.  The fact that you have to remember they don't understand when you are down and feeling alone.

Tomorrow I will pick up from where I leave off, but for today, I need to go.   I'm having a decent day and I like to take advantage of days like this because I never know when I will be stuck in my bed.
We have 5 kids between the two of us and they have us running ragged already even before school has started.

I know it's a tired and over used saying for 2012, but it wasn't till the 2012 Olympics, did I understand that it was just a fad, but it represented a time, an era in history.  A time of war. World War II.  It means something to be because in my body I now fight a war and I must remember to do just what the poster says.
It has become my private mantra since then.