This Will Probably Be The Last Time

That I write till I head to the doc next week.  Ha. You thought I was going away. Not that easy.
Just a quick check in with you all.  I continue to thank you for your support and concerns.  I have now been gluten free for a month as of today.  It has gotten easier for me than it has my husband I think.  In some ways he has been forced to convert too.  He still gets to enjoy the double cheese burger while I have my salad, but he is very supportive in making sure that wherever he gets that burger that they have healthier and gluten free options.  I haven't even missed it like I thought I would.  Except donuts.  I barely even ate the things before, now I can't get them off my mind. My heartburn is gone as well.  I have also shed 10 lbs total.
After enjoying a few weeks of no pain, I am here to report that it has slowly started to come back. Mainly in the joints.  I had chest spasms so bad yesterday that it still hurts to breath.  My skin feels burned to the touch and the only comfort I can get is to lay on my stomach.  I will talk to my doc next week about increasing my Neurontin. Next week is when the real fun begins. This past month has been the prepping period and now we get down to the nitty gritty. Yes, the week before Thanksgiving.  I just hope it's not another Thanksgiving in bed like last year. I also have an appointment with a  Neurologist in the Dallas area as well that specializes in Lyme.  My doc referred me to her and wants to rule out the beginnings of MS.  I probably mentioned that in a previous post.  We repeat ourselves a lot or just flat out forget so this may be a pattern you will see in the future so I apologize in advance.  We repeat ourselves a lot or just flat out.....Now THAT was funny. A little?

To all the deer hunters remember to have your loved ones check you for ticks.

I also want to send a huge thank you to the guys that work with my husband at the Texas City Police Department.  Every year they give to the United Way and they designate what organization they want to give to.  This year my husband had the United Way add Texas Lyme Disease Association (TxLDA) to the list. He was informed that at least 15 of his fellow co-workers designated TxLDA as their choice for their donation.  It is anonymous, so I have no way of know who, but it warms my heart greatly to know this was done.  So, with that I send a thank you and a good night.

Random Jabber & Blood Results

I am happy to report that my joint pain is giving me a much needed break.  The shooting muscle pains have even calmed down.  I still have several twitches, I'm sure that will not ease up for some time.  If beauty sleep were true I would have been crowned Miss Universe by now.  I cannot seem to shake the sleepys.  I'm sure my body has really needed it.  The doc wants me to have uninterrupted sleep at night and no crazy "Pink Floyd" dreams.  I'm still not there.  The lucid-colorful dreams I have are such a random hodge-podge of sorts.  Last night it was alligators under me as I swung from tree to tree till I made my way onto a cruise ship where my kids and their friends were.  I was told by the other parents to take them to get something to eat and next thing I knew I was in a HUGE HEB and I couldn't find a salad anywhere.  Then there was a man complaining in wine department (no pun) about the vintage of his "boxed" wine being poor and junk and he preferred they carried a certain type of boxed wine.
THOSE are what the doctor called pseudohallucinations.  These have to stop.  It's part of the bacteria and nerve damage. Wikipedia describes a pseudohallucination as the following:

A pseudohallucination is an involuntary sensory experience vivid enough to be regarded as a hallucination, but recognized by the patient not to be the result of external stimuli. In other words, it is a hallucination that is recognized as a hallucination, as opposed to a "normal" hallucination which would be perceived as real. 

In layman's terms I know it's not real.  I get these from time to time when my vertigo is really bad.  It is as if the whole room jumps upside down. People that have had frontal lobe injuries or frontal lobe epilepsy may experience these as well.  

And no, I do not hear voices.  Except the mom, mom, mom, mama, mama, mommy, MOM.  Those are the only little voices I hear. 

Now all of that I just wrote really has nothing to do with my blog.  I just needed an interesting intro because, "Good morning, here is a list of supplements I am taking and why." Just didn't seem as fun, but that's really what I'm going to share. Even though the majority of you that are reading and following my are friends and family, I may have a fellow-lymie reading as well. I want those of you without the disease to understand and to help those of you who may or do have the disease.  

DISCLAIMER: I am not a medical physician.  This is what my physician has me taking.  You should always consult with your physician before taking any suppliment or medication. 

Methylcobalamin B-12 injection 1cc-supports nervous system and healthy blood cell production. 

Trans-Resveratrol 1 500mg-antioxidant that supports free radical damage

Magnesium Malate 3 1250mg-energy, for pain and tenderness caused by fibromyalgia pain or chronic fatigue syndrome

N-Acetyl Cysteine 1 600mg-helps support lungs and cystic fibrosis

Alpha Lipoic Acid 1 300mg-antioxidant used to transport free radicals helps treat peripheral neuropathy, helps aide in brain function.

Fish Oil 2 2000mg-heart

CoQ10 1 100mg-heart, also can help with muscular dystrophy

L-Glutamine 1 tsp 4500mg-amino acid

In addition I am also on a daily vitamin and two different probiotics making my probiotic daily intake 45 billion.

I am also on a couple of prescriptions for the nerve pain as well and it has made such a big difference. I'm so grateful to finally have a break in pain.

My blood work came back.  The doctor informed me that I have a blood disorder called Thrombophilia.  It is also hyper-coagulation.  By blood is thick and has a potential of clotting.  What happens is as the blood flows through the veins it can clot and break off and travel and end up as a stroke, embolism, aneurysm, or in the lungs.  He wants me to start taking baby asprin and folic acid every day now.  I did do a small amount of research on this condition and there were two types he tested for.  One is common in Lyme patients with co infections. A doctor conducted a study in which he took Lyme patients with co infections and 90% of them came back positive for hyper-coagulation. I highly recommend if you do have Lyme to have this blood test performed.  The other out of the two was called Protein C test.  I have a protein C deficiency.  It is a genetic mutation and it also means my brother has it.  He and I have both had surgeries.  I know he has had at least 2 that I can remember.  I have had 3.  It's been grace that has kept us healthy.

I am still educating myself a bit on this and I'm sure my doc will go over it with me in more detail when I revisit in two weeks. He did tell me that I have a greater chance of developing problems with my heart that originally thought due to this. Still bringing that praise I talked about in the previous blog posting.  It's getting a little hard to, but I am thankful that I have never had anything happen as a result and that I now know.  

Bring The Praise

This week has been full of obstacles.  It's been two weeks since the docs visit.  Since then I have been on so many supplements that I'm not even hungry by the time I'm done taking them.  I have meds for the night, meds when I wake up, and then meds a few hours after I wake.   I sleep more than I'm awake. B-12 shots 5 days a week and not the energy I expected either. As mentioned before the doc wants my nerve and stress levels at an all time low.
With that said, our sermon at church last Sunday was bringing the praise with you.  No matter what the situation, there is always thanks to be given.  Example and I know a lot of you women have seen the little poem where Thank you Lord for the dirty dishes, it means I have been provided with food......and so on.
Well, it seems that I have been tried and tested to "bring the praise" with me for the past two weeks.
Teenage child decides he is upset with you and it breaks your heart? Thank you Jesus that you know where he is and that he is safe and happy.  Husband runs out of gas?  Thank you Jesus that he has friends ready to come to his side and that we even have a vehicle to run the gas out of.  You go for your blood work after a horrific day just to be told you have to come back?  Thank you Jesus for the bench that you provided for me to sit down on and have a break down.  Yes, that last part was meant to make you chuckle, but it was indeed true.  We weren't even past Monday and already God was giving us every opportunity to apply his message to our lives.  I had been putting off going and doing my labs for no reason.  I just dislike dealing with the lab.  It's full of someone complaining on their cell phone as loud as possible what all they are having done and how terrible it is going to be.  Then the lab workers.  Bless them.  I only have to deal with it for a short time.  They deal with it all day long 5 days a week.  I made it there at about 4PM.  They closed at 4:30.  When she saw what all I had to have done she told me I would have to come back in the morning.  I was certain she was pushing me off.  I walked into the lobby and sat down on the bench.  I proceeded to boo who while people passed me to swiftly grab the down elevator.  I dried my eyes after a quick prayer and went home and got straight on the Internet to look up my blood work code by code.  She was right, it had to be done in the morning.  Humbled much?  Not only that, but there really wouldn't have been a way for me to give that much in labs and then safely drive home.  My husband was my escort that next morning and after 18 vials of blood and $6,500 worth of it at that we were done.
The lab tech even looked at me at one point and asked, "You have Lyme?" I shook my head and she said, "You're really sick." Yes, yes I'm really sick.  A reality that is sinking in more and more.

The teenager woes are a whole nother story.  in my Forrest Gump voice Everyone keeps telling me it's the age.  We do have a blended family, so he is with his father right now.  Except for the once a week text I haven't heard from him.  This parenting thing was so much easier when my hardest decision was which diaper to buy.  Doctor's orders were to not let myself stress under any circumstance.  Somehow I am keeping it at bay.  I remember being his age and I wasn't exactly a bundle of joy.  It was at his age I started testing waters with my parents.  I just didn't have another parent to run to because mine were under the same roof.  Bringing the praise hard on this situation.

Gluten free for two weeks now. I've learned that the brain tricks you into thinking that just because the gluten is gone that the whole pan of gluten free brownies you just polished off by yourself are carb free.  As a matter of fact, the carbs look to be higher in the gluten free products, so due to the tightness in my britches here lately, I will be just eating clean and paleo-like.  We did try the pasta the other night.  It was nast-tay.  My husband said that maybe it's just an acquired taste.  No wine is a an acquired taste.  This was just gross.  I'll stick to spaghetti squash for my noodle substitute.  Which if you've never had is actually very good.

Last night my daughter's soccer team all went to the Dynamo game (Houston's professional soccer team.)
I think I had a bit of a panic attack.  My sound sensitivity has been off the charts.  I can hear things like I'm wearing a miracle ear.  It's all amplified too.  At one point my legs and hands started shaking quite bad.  I was fine once I got to my seat and sat for a bit.  I came home and slept for 12 hours.  Hard. It is crazy the things that I do now that just completely leaves me spent.

As I go into this next week, I up my doses.  So, just about the time I'm used to it all I will be starting over. My big goal for this week is to get my weeds pulled in the backyard and grocery shop.  I'll be bringing my praises.

Bring A Praise Podcast

Sleeping Beauty?

So I've been pretty much comatose the past few days.  I don't even remember much from yesterday.  I had to ask hubs several questions in order to jog my memory. I've been sleeping through dinner quite a bit.  RX and injection in the morning, then another RX at 10AM then another at  6PM then 2 more at bed time.  Plus supplements and probiotics.  Next month I will be adding 3 antibiotics to be administered all at different times.




I need a musical pill box.  You know something that will chime every time I have to take something?  I know they have apps for all of this.  If I can manage to keep my head up long enough I may plug in what I need.  I feel narcoleptic.  I need a helmet so when I crash land into my bowl of soup I don't get it in my hair.

Time for random thoughts:
I really do hope to at least get out and pull weeds from my back flower bed.  They could use a mother's loving.  Oh and pajamas with feet.  I think I saw some Hello Kitty ones at the Wal Mart.

Everyday is a new challenge and a new change.  Sometimes a new ache or pain and others relief and a break in the pain.  Blue October has a song called Graceful Dancing.  In the song it talks about sadness and depression, but how you must keep moving forward to the next new day.  Just because it's a bad time right now doesn't mean it always will be.  I am quite frustrated that just a few short years ago I was able to keep a spotless house, all the errands ran, serve on a few boards, make classroom treats, attend every function any of the children had going on even if it was at the same time and in two different town and still have dinner ready on the stove when we all made it home for the evening. I was Wonder Woman. At least in my mind.  Now I'm Wonder Woman in chains.

Lyme or no Lyme I know all of you other women have felt like this at one time or another.  Well, I feel a nap coming on.  After all I have been up for 2 hours straight now.

Shots Shots Shots

Now that I am in real time and I have caught you up on what all I have been going through I should be able to blog a little more regularly. I had my first methylcobalamin B-12 shot this morning.  Yes, I have traded glass shots for needle shots.  *insert sarcasm here*Ahhh to be me. It's not easy.   It was two hours ago.  I do think the anti-seizure meds are starting to do their thing.  I am pretty sure I slept through the night for the first time in forever.  If I did wake up I do not remember it.  I am thrilled to report no face pain today.  Amazing.  I have a case of bells palsy where the whole entire side of my left face will hurt.  There's been mornings where the husband says it looks like I've had a stroke.  It will draw up or completely droop and I can't feel a thing when it does that, but when I do have pain it is excruciating.

My equilibrium is still way off.  A mixture of that and my body regulating the meds I'm sure.  I wanted to go right this morning.  My senses were delayed and I just wanted to walk right.  I was walking like I was in a fun house and even ended up on the floor at one point. My head feels like it's under water.  I think I'll just sit for now and blog. I've been very tired.  I have slept more the past week than I've been awake.  My husband and kids have been wonderful in helping out around the house.  It's so hard as a homemaker to not be able to do the homemaking.  I really need to go grocery shopping and energy just hasn't permitted it.  I am on day 6 eating gluten-free and I haven't had any heartburn or reflux.  It's crazy how omitting one thing from your diet can change the body so much.  Doc said it should help with my inflammation as well. I fear that the way my knees have been I'll end up seeing an orthopedic doc next.

Side note to all my hunting friends.  Please make sure you use a deet repellent.  This is supposed to be one of the worst years for ticks due to the fact we didn't have a cold enough winter last year.  They love deer.  LOVE!  I'm sure you know this already.  Do not for one minute think that because you are in Texas you are immune to a tick carrying Lyme.  Cases are on the rise in Texas.

Lyme, Co-Infection, Meds oh my!

So, finally a doctors visit with more answers being spat at me faster than I can ask the questions.  It was supposed to be a two hour appointment that turned into about a three.  I'm not complaining.  Not one bit.  He started off by asking me questions about my medical history.  Most of which I've already disclosed in my earlier blog postings.  He wanted to see how my snap was.  How fast I could answer his question and how articulate I was.  That in itself was frustrating and I teared up a couple of times.  I felt so intimidated till I had stopped to realize exactly what it was he was doing.  He wanted to know the last time I could remember feeling 100% spring in my step and mind was cleared good.  I couldn't.  As hard as I try I cannot remember feeling that good.  I've learned to live day in and day out with this disease and I do not know any other way.

Upon examination he explained that I am carrying a co infection called Bartonella.  It's not uncommon for a tick to carry more than just Lyme, but you HAVE to kill the co infection before you can attack the Lyme. Soooooo.  Guess what?  That's right.  All the treatment has done the past year is made my Lyme stronger.  It didn't even begin to attack the Lyme, it just made it rear it's head and say you can't catch me.

The symptoms of Bartonella are very similar to Lyme.  In addition there are these nodules that will appear over the limbs.  When he had me run my finger down my shin I felt hundreds of them.  I thought that was just my shin.  I had no idea.  I even told him I've had that forever.  He examined my balance and coordination.  My family and friends are probably laughing right now because they can all recall a time where I was standing or sitting one moment and the next I'm on the ground as it it were magnetic.
I failed terribly at the test.  He looked over my memory function testing that I had done a few months back.  I have full blown neuro-Lyme.  I'm literally loosing my mind,  There is swelling, cell degeneration and plaque build up.  The nerves in my whole body are frazzled and because of the damage the Lyme has done to my brain my nerve endings are sending out signals of pain.  Imagine a power line that is live and had been cut.  That is what is going on through out my whole body.  My digestive system is shot.  The arthritis and muscle pain......in his words. "It's time to take off your halo and start getting better."  "I know  you want to meet Jesus, but at this rate you'll meet him sooner than everyone is ready for you to."  He explained the fact that I could have a heart attack at any moment because of the strain the disease puts on the heart.  Oh there's so much more, but this is the important stuff I'm sharing with you.

So there wasn't much of a diagnosis for him to give.  I already had that.  The treatment is why I was there.
I am now on a strict gluten-free diet.  This is day five and no it's not easy.  I've already cried over the fact that gluten is in everything it seems.  I also have to watch my sugar and bread intake as well.  Anything yeast can feed on.  Lyme loves sugar. It's been frustrating, but I have to heal some of the damage that has been done to my espohagus and stomach before I pump it full of antibiotics.

Next is the nerve meds.  I have to be able to sleep throughout the whole night.  Right now I wake at least 3 times and half the time I wake from a crazy dream and I am not sure if I'm still in the dream or if it's real.  I have to stop and think what day it is and where is everyone and so on.  I have vertigo and shaking constantly and I've talked about the seizures before, but when I blank out or can't get the right words out are a type of seizure as well.  All this I have to get under control.  My nerves needs to be at a calm and at rest and the seizures under control.

In addition to all of the supplements I am taking I also today....waiting for the FedEx man....will begin 30 days of Methylcobalamin B12 shots in the tummy to help make my heart stronger.

I basically am spending the next month priming my whole body from my brain to my heart to my stomach to the nerve endings in my feet for the aggressive treatment.  He said in my state if I do not do these things there is no way even I who has been in the pain I have would be able to tolerate the treatment.  I would end up in the ER.

I go back to him in November and I also will visit a Neuro-Lyme specialist per his request to make sure I do not have the beginnings of MS (multiple sclerosis) starting and to go over my cognitive memory function. When I go back, in addition to what I am doing I will begin a round of three different antibiotics at the same time.  Ahhhhh real fun at last.  The good news is he is hoping for no pic line and I'll be able to take the meds orally.  I pray it stays that way.

So, meanwhile, I have been sleeping ALOT and I will be making lots of casseroles to put in the freezer for the hubs to be able to cook next month. Man and kids cannot live on Hamburger Helper alone. Not without whining about it anyways.

Finally

In order to really I mean really attack this Lyme we had to find not just a doctor familiar and willing to treat the disease, but a doctor who speaks Lyme fluently.  These are know as Lyme Literate Medical Doctors aka LLMD.

We were put into contact with the only one for the whole state of Texas.  We called made our appointment with the doc and the day that I finally got to meet the man who now holds my life in his hands was here.

We left our house at 4:30AM to catch a 6:15 flight to Dallas.  Didn't sleep much the night before.  I was so anxious that I think I only got 3 hours of sleep the night before.  If you have flown to Dallas from Houston or vice verse then you know it takes longer to go through the process of getting there and getting checked in than it does actual flying time.  I don't fly well, so for close to 40 mins Kenneth was feeling the wrath of my nails in his arms.  Once landed we had exactly an hour and a half to get to our destination on time.  We paid cash for this visit (the doctor will only take cash due to insurance controversy) and we paid ahead. Add in the plane tickets (the time of the appointment was the only one we could get several months back and it was cheaper for us to fly than drive) and we were already in a good amount of money.  Now all we needed to do was pick up our rental car which was also paid for in advance.  As we approached the counters where we were to get our rentals they all had signs on them with instructions to go to the shuttle buses.  As we made our way there and sat we watched at least 10 buses go by and none with the name of our rental company on them.  After a while Kenneth asked someone and they informed us we were to get on this bus and it will take us there.  You mean the bus we've already watched 3 of go by?  Seriously, I felt like Forrest Gump sitting there waiting for my bus.  We loaded the correct bus and the driver asked us on the way there if we had our papers.  We informed him there were no papers so get.  In return he informed us that we wouldn't be able to rent our car unless we have the papers.  (Contract)  We arrived to the rental hub and they immediately informed us that we couldn't have a car and had to go back to the airport and get our contract from the lady at the counter.  That we shouldn't have passed her by.  We didn't pass her by.  There was no one there we argued.
I felt my melt down coming on.  It was like both walls were closing in or the ground behind me was falling off into deep space or hell.  I started getting really hot, I covered my face and fought tears as I explained the importance of our visit to Dallas in the first place.  Then it happened.  Remember the Christmas Story and the tire changing scene?  That's what happened next.  Only I didn't say fudge. I shut down after that.  Decided it would be best to keep my mouth shut.  A worker there took us back to the airport were we found ourselves right back at the desk again.  Where she wanted to argue that she was there at 7:20AM and we had to tell her she wasn't because we were there before that.  Never the less we got BACK on the bus back to the rental where the manager met us this time and comped our rental fees.  So, through the frustration was a blessing.
We got to our destination at exactly 8:30AM.  The time we were told to be there.  The 3 hours would be forever life changing.

Sleep Shmeep Sheep

I can't sleep.  It is 10:30PM.  I have to be up at 3:30 to be at the airport on time for a 9AM appointment in Denton, TX.  When I last left you I had just told you about my seizure experience.  Ahhh so many thoughts and emotions running through my mind right now at this very moment.  To make a long story longer like I like to say, I had quit my treatment shortly after my episode.  I visited the doctor only once more before trying to convince myself that I didn't need treatment.  Summer was coming up and I wanted my friends and family.  I spent spring break in Missouri with new friends (childhood to my husband) only to end up in bed one night barely able to walk.  I enjoyed the friendship of my girlfriends in May and even as timing would have it was able to have my childhood best friend stay the same weekend with me.  Summer was filled with good times and our annual river trip.  (Which resulted with me in bed early every night due to a repeat of seizures.)

I was regressing and fast.  The disease had surfaced after years of suppression and not only was I now where I started, but so much more.

Alone, until my husband had enough.  He has been my rock I must say.  He contacted many people within the Texas Lyme community.  I even have made a friend who was living right here in the same town as myself and didn't even know.

My husband and I have been driven to make a difference now and that is what started me wanting to share my story.  I'm fading.  I'm falling short of what I should be as a mother, wife, daughter, friend, sister, etc etc etc.....

I'm not at all what I used to be physically wise.  Heart wise, stronger than ever.  We embark on an amazing journey tomorrow.  We do not know at all what is awaiting.  We do know it will not be easy.  It will get ugly.  We're not even guaranteed a positive outcome.

You've been reading my blog.  You've kept up with me thus far and I thank you.  It means the world to me that you have even taken the time, but all of it....that's was just the introduction.  This is where the story begins.

Wide Awake Seizures

For the most part, I had learned to keep to myself.  I would talk to friends about what was going on with me, but I was hesitant.  It also started to grow mundane.  My explanation went from "Lyme disease is....(30 min explanation)" to "I'm just sick but hey....(shrug shoulders)  I was tired I was stressed I was growing angry I wanted to give up.  I was loosing control.

By now the tremors and the shaking was picking up.  I could be holding the TV remote or my fork and in a second it would go flying across the room.  It was like I purposely would chunk the thing using super powers.  My knees were giving out a little more and holding a conversation? Forget about it.  I started to withdraw myself from others.  I started to hide.  I didn't want to have to explain my actions to people outside of my home.  It was what it was and I started to realize I was stuck in a bad dream and there was no way out.

I had been having a super bad day.  I woke up that morning and said a prayer before my feet even hit the ground.  As I often do. (It should be everyday.)  Talking to God like that will have one of two results for me.  Easy Cheesy Breezy day or pure challenge.  This was a day of nothing but challenge.  My heart and patience was tested all day.  I am a shover.  I like to push things down till they explode.  I don't know why I do that.  It's so destructive.  I always know what the outcome is going to be, but yet I do it anyway in hopes of being able to push it down so far it will just evaporate.

I just needed to get away, so before preparing dinner that night I ran down the street to catch a bit of my son's baseball practice.  I looked horrible.  No other words to describe.  Matter of fact I spend many days looking like that here lately.  As I'm sitting in the stands, talking to my daughter, I start having this strange feeling.  It was like the Matrix.  Everyone is moving normal around me and I'm in slow motion.  I got these chills.  As my daughter was talking to me, I was listening and processing what she was saying, but I was repeating her in a mocking fashion and I had no idea why.  I looked at her and told her I had to go.  I did just that and very abruptly.  I just got up and left.

I came home and proceeded to start on dinner.  This feeling.  It was so strange.  I could not shake it, never had it before.  It was almost euphoric. (Euphoria has been related to people who have nervous system disorders or MS.) It is also a way of keeping the body from recognizing a state of Hypoxia.  Hypoxia is when the body is not being supplied with an adequate amount of oxygen.  This can happen to people with anemia, carbon monoxide poisoning, pulmonary fibrosis, hypoventilation, and more.  One of the symptoms is a seizure.  And that is what started to happen next.

As I stood at the stove and worked on dinner I knew what was next as my left arm and hand started to jerk.  I went straight to my bedroom to lay down.

From there the convulsions started.  My head shook violently back and forth.  My legs and arms kicked as if I was in a wrestling match with the air. I drooled, spat, fought to speak.  I was awake.  I knew what was going on, and the worst part?  Watching my husband watch me go through it.  My thoughts worked, but the rest of my body I was not in control of.  I wanted to stay I'm okay as I had been able to in the past when I would have shakes.  I couldn't get anything out though.  Then the crying.  The uncontrollable wailing.  It left me exhausted and I do not remember much else after that.  It takes so much out of you.  The whole entire body is spasming, the jerking leaves a soreness like being in a car accident.  You cannot catch your breath. I sleep pretty hard after my Lyme seizures.  A house full of children I had tried to protect and hide the ugliness of this disease from and could no longer do so.  How horrible, how frustrating.  For someone who is a controlled and orderly person, this felt like the end.  The end of routine and the beginning of having to accept this was my now life and I needed to start learning how to take my life day by day with Lyme

Sometimes The Hardest

part of this whole thing is the getting better.  The pills, the diet.  It makes me sooo sick to my stomach.  The die-off (herx) in order to feel better for a few days can be killer.  Not to mention what this has all been doing to my mind lately.  I feel incapable. Inadequate. A burden. Less of a person because I can not give it my all.  I cannot exert my self -body, mind, and spirit to it's fullest potential.  Not like I used to.  I long for those days.  I hope for them again.

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.