Thanksgiving Eve Thankfulness

One long road. On one side of it there are waves. Life pushing at me. Telling me to do something, or I don't like you right now, or no calmness for you today and tomorrow isn't looking good either. On the opposite side there is calmness. All is right with the world and nothing that comes your way can break that feeling. It's quiet. There I am. Driving right down the middle of the two. 

Last week I went for a drive out along our 5 mile long fishing pier. I like going out there when I cannot seem to calm the noises in my head. It's a different world there. Alone. Just me and my God. Sure I can talk to him anywhere, and for the most part I do, but out here he talks back and I am still and quiet enough to listen. 

This blog isn't going to be about my disease. It is so much more. It is me stripped down emotionally. 

 Just because you are sick doesn't mean life stops. I can chose to lay in bed all day or push through everything so that I do not miss out on experiences with my children, my husband, family, friends. Life has not been easy. I suppose you learn to live with the pain. The physical pain that the disease hands you and the emotional pain of feeling alone at times. Many of you have no idea, but I cry sometimes because my skin hurts, or I've had nerve pain on the side of my face for so long I do not know what it is like to NOT have it. Simple things like chewing food take me twice as long because of the hurt. EVERYDAY.  

I have gotten to where I can only dry my hair every few days because of the shoulder pain and popping. My fingers have started to seize up on me. Making it difficult to even type these blogs or sign my name to a receipt. Something is always cracking, oh and my favorite are the sudden flashes of nausea that have started to come and go on a daily basis. I've had very bad breast pain that I have to have checked out in a few weeks. Just at my dental appointment the other day it was, "You have great hygiene, but you are started to get some softening and receding around your gum line." I just asked what to do and said okay. Knowing from other Lymie's that it's just another Lyme thing. Some of us end up loosing teeth as the disease progresses. 

NONE of this is pretty my friends. I can slab on the lip gloss and the mascara and the smiles. I can throw on the heels OR running shoes. The pain is still there. Everyday. Everywhere I go. 

.....but.........my heart is finding contentment and peace. My business I have worked at for two years is finally moving along, hard feelings I have harbored against wrong doers I am finally able to start letting it go. I appreciate my lil family and what they do for me and how proud they make me day in and day out. 

We just recently had an experience with an exchange student. We wanted one so that not only we could give an opportunity to a child, but so that our children would get a lesson in appreciation. Things didn't work out and he just recently left. Little did my husband and I know that we were the ones who got the lesson. We have great kids. It brought us all closer. Made me appreciate the hard work they do, and things could be so much worse. Sure, we are still missing one final piece to our family puzzle, but I have to let that go and let it work itself out. We will be a whole family again. God told me so. 

I'm thankful for the health and mobility I DO have. I'm thankful for my great kids that work so hard to do write by others and keep good grades and love God. I'm thankful for my parents love and understanding. For the fact I can become and emotional wreck and just walk off and they let me and do not get angry with me. I'm thankful for my friends that check on me almost on a daily basis. That send me recordings of a prayer that a pastor has prayed over me because they asked him to. I'm thankful for feeling content in life. It has taken me my whole life to get here. I'm thankful for small blessings. They're everywhere. We just have to be quiet enough to hear them. I'm thankful for the best husband, life-partner, and soul-mate. God matched us just perfectly. I'm thankful for his support and the times he carries me. Whether it's literally carrying me because I cannot walk or carrying me because I cannot pick myself up off the ground from crying. I'm thankful for all he does to provide. I'm thankful for my loving Father and Savior. His grace and never-ending mercy he shows me everyday. 

I drove away that morning after my long talk with my spiritual Daddy. I drove into dreary dark clouds as I headed home, but was reminded as I looked in my mirror that he always has my back. 

This Can't Be Good

I said as I woke up this morning. I am sick. Now comparing a Lymie to sick is kinda like blue cheese. You know, how do you know when blue cheese has gone bad? It already looks moldy and stinks as it is. How do you you know when a Lymie is sick? They are already pitiful as it is. It's intensified. I also do not always have a stiff neck and a golf ball stuck in my throat. My husband usually knows I'm really sick if I skip my morning java for hot tea.
I did finish painting the back and front of my house. I still have the sides to do. I'm dreading it. The weather has been beautiful. We enjoyed some hot cocoa and a fire in the backyard Friday, soccer, farmer's market, and Kemah Boardwalk on Saturday, church, a little shopping, and Sunday dinner last night. This morning, I woke up and quickly realized that swallowing, eating, and drinking will come with the price of pain today. It was one of those mornings when the hubs had to help me put my slippers on. Body aches are starting to set in.  To most it may just seem like a mild flu or cold. To me, it's death. I had very good intentions of getting some stuff done today too. Instead, I'm stuck in bed. I can feel my muscles and joints seizing     up as      I t  yp  e.

Come Monday

Monday mornings are always full of songs playing in my head. Just Another Manic Monday, Monday Monday, Come Monday...you get it.
There's nothing manic, there's nothing about Monday that will make it alright, and Monday is here to stay.
It's just another day these days. They're all really starting to run in together.  The temps have started to level out outside. No more 90's. That has helped a little bit with some of the joint pain. My feel and face feel like ice. The neuropathy in my face feels the worst it ever has. It feel like someone is streaming ice cold water down one side of my face. I cannot open my mouth all the way because on that same side my jaw locks. It's a constant pain that's made me actually think about having it broken and reset.
I have been eating gluten free and extremely low carb for a full week now. I did cheat on Halloween with some popcorn and a slice of pizza, then again yesterday with a little white rice. My skin has started to clear back up and gut problems are subsiding.
A few weeks ago I started painting the outside of our home. It is taking me forever have to break a lot. I still haven't been able to finish the back of the house because of all the up and down on the ladder and standing.  I'm very weak right now.  Kenneth works too much to find the time to do it. When he isn't working right now, he is busy closing in half of our garage for a 4th bedroom. Something we have needed for a while now.
It was becoming tiresome for me to blowdry my hair even, but I made a spot in my bedroom where I can sit on the floor and dry it. Something so small and simple has made such a difference.
High school band is winding down a tad, and fall soccer is almost over. This mama will get a chance to catch her breath for about a week before the holidays move in.

Time To Sit

It's what I need. Just time to sit and chat.

 About a year and a half ago. I had this dream that I wanted to fulfill of making handcrafted soaps and scrubs. Artisan types. It was something that I had been interested in for years, but I just never pursued it. I have dabbled with it back and forth over the past year. Even have changed my logo. I am now enjoying spending time every day building what I hope to be a steady business. It gives me a great out from the everyday. Helps take my mind off of things from time to time. What is great too is I don't stress over it. I can get up and work on it and take a break and repeat.

I did my very first show this past weekend. Weather was great and it gave me the perfect opportunity to do a run through. I know am ready for a farmer's market.

I have had horrible ulcers the past few weeks. Reflux in the middle of the night, and a cold that I cannot shake. The family just needs to wake up, say one "bless you" then be on with their day. I have used the heating pad on my back every night I go to sleep and I get some relief there. My back feels shingly right now. I am going to go back to eliminating the gluten from my diet. I may not be seeking treatment through a doctor right now, but I am going to lean on a little western medicine. It's been a year since I did my 18 day fruits and veggie fast. While I'm not ready to give meat up just yet, I will probably start preparing for the fast. I prepackaged a bunch of fruits and veggies for my "green drinks". Perhaps one a day. Detox baths and rest. I just need rest. I CRAVE rest right now. I just can't. I see everything that needs to be done and rest just isn't in the equation. Lyme + type A personality + big family = no rest.....
Now with the holidays, those chances go down even further. Boo whoooo.

Off to make 5 tutu's for some very precious teenage girls for halloween.
Adrienne

Houston "Insert cliche here"

I have hit a complete road block in my fight. I have chosen not to continue with treatment. This was not a hasty decision and my husband really tried to talk me out of it, but ultimately it is my choice.  I don't fight the bad days anymore. I rest. Good days still require some rest. I am tired. I am broken. I am trying to just make the best out of what ever I can. The stresses that my everyday life have brought on in conjunction with being ill has made it so very counterproductive. I cannot keep up with both and it seems the only thing I do have control over is my choice.  I am finding it easier to just sit back and let everything run its course.

Something in the Air

Today's entry is brought to you by sheer frustration and a free ride with me on the Pity Train. Yes, there is something in the air this past week. It's going from 104 degrees to low 80's. NOT a Lymie's friend. I spent a lot of last week crying and laying around in bed. Even on Friday during my gym session I managed to run off to the locker room not once, but twice to cry. The sense of myself losing control over my neuro side sucks. Small twitches, muscle myalgia, freezing body temps, and the sleep. I cannot get enough sleep.  We had been on vacation with friends where the temps were warm and the sun was shining. I wanted to sleep. Even felt like the flu a few times. (Classic herx onset.)  As the low pressure systems and the fronts have all shifted, so have my bones.

I'm not really sure where my energy comes from these days. I have started taking on more projects and trying to be positive. I work out quite regularly, run more errands, try to just be more involved than what I have been allowed to be over the past year.  It takes a lot of digging deep.  I haven't been on any of my medications except for my nighttime dose of gabapentin and the occasional Tylenol. The past week though, I can't get enough hot epsom baths.  I also discovered through one of my Lyme groups that drinking Alka Seltzer Gold helps with the herxing. The sodium bicarbonate in it helps raise the PH levels in the body. I'm not sure of the science of this all and I'm also not sure if this is a mind over matter deal, but either way, I seem to get some relief.

We took in Chung Do, a foreign exchange student from Vietnam.  He came to live with us just at a month ago. It's been easier than I thought explaining to him when "Mom isn't having a good day".  He seems to understand and when I ask him if he understands he just says, "Yes, because of your Lyme Disease."
Lyme is universal.  I was able to pull up some information on it that he would understand.

I see the doc in a few weeks. It will be my first visit to him since April.

No such thing as Chronic Lyme some say......I wish I say.

Maintaining Positiveness

Greetings to all. I know it has been a good minute since I last posted. What a summer I have had. Best in a long long time. We traveled, celebrated birthdays, kids went on vacations with friends, and just spent quality time together. I now have 2 sophomores, 2 jr highers, and 1 in intermediate.  No more elementary. It's super bitter sweet for me.

Lyme Problems

When I last wrote I was scheduled for removal of my left thyroid. It was a very simple surgery. I did walk like Frankenstein for about two weeks, but my recovery went way better than expected. I spent most of May taking it as easy as possible. A challenge when you have 5 kids and it's the last month of the school year. Two weeks after my surgery we had a crawfish boil for close friends and family. My husband and I also went out of town to Messina Hof Vineyard for the weekend. It was perfect.

Louis Pasteur's doors that now adorn the entrance
to the B&B at Messina Hof Vineyard

As I healed and started to feel better, I slowly started to exercise again. I started walking, then running and walking, got back into the weight room at the gym. Now I'm up to 1 hour workouts sometimes longer 5-6 times a week!! I could barely walk last year and now I'm running. Amazing.  I thank my Jesus everyday for the blessing of health he has poured down on me. It has allowed me to thoroughly enjoy my family and friends.









I have noticed over the past week maybe a bit of a relapse. Brain fog seems to be setting back in. I'm hoping it is because I haven't been sleeping all that well.  I'm tired all day and when I lay down at night I'm wide awake. Some nights only getting 2-3 hours of sleep.  Not good for a body that is fighting a disease and slowly winning.  I have started taking melatonin at night and last night added Chamomile. I slept wonderfully.

Thyroid scar healed beautifully. 

Every day I dig a little deeper into putting natural things into my body, eating cleaner, taking care of myself.  I know how gloomy and doomy having Lyme can be.  Lack of support, lack of proper treatment, awareness, etc. It's so key to surround yourself with positive thoughts and people during your fight. I'm very blessed to have a super great support system.









I know this is crazy, but we are returning to the cruise ship we were stranded on in a few weeks. I am super excited. A few weeks after that I head back to my LLMD. Our last conversation was on the phone. It went well. There's only so much you can discuss on a phone visit. I'm hoping for a "remission" prognosis. We will see.

Lil pic I like to show off showing the change I've made
and the progress that has come in just 6 months. 

Post Triumph Recovery

It's been almost 3 months now since I last posted.  My goodness has so much happened.

Our first Texas Lyme walk was a success and I reached my goal!  I had quite a support group show up to walk with me in the freezing cold on a Saturday morning that required us to get up before the sun.

We went on our cruise in February. Yes we were on the ill-fated Carnival Triumph that was stranded in the Gulf of Mexico for 5 long days.  The poop ship, the turdtanic, the floating petri-dish. The first part of the cruise was a blast.  The second was an experience.

Our Bedroom and Neighbors

Needless to say, I surprisingly was healthy as possible during that time.  I happened to take all of my medications with me for fear I would need to prove my RX while going through customs.  I did I do not know how many flights of stairs over those few days.  We were displaced after the fire and slept on the deck. In order for us to find a restroom it required us to search on different floors and different parts of the ship.  It was miles I'm sure over the days that we walked.  The warm and humid weather helped with joint pain. As we got closer to Mobile, AL we went through a cold front and by the last day I was spent.

The following Monday after we arrived home and I had an MRI scheduled.  My neuro-lyme had ordered it to check for any nerve damage.  It took pictures of my brain, neck, and spine.  A few days later they called and told me it was all okay and showed no signs of damage, but that they discovered a spot on my thyroid.
A week later I was having an ultrasound done.  The ultrasound revealed several spots and resulted in me having a biopsy on one of the nodules.  After four passes into the nodule they were not able to break it and therefore could not get enough cells out to confirm if it is benign or malignant.  The doctor and myself have decided to proceed with removal of my left side. This will happen next week.  She said they will examine it while I'm in surgery and if it is benign then they will leave the other half in and will just watch the other spots over the next few years.  If not, then they will remove my whole thyroid.

I have made great progress since first starting treatment.  I met with my LLMD last week and he explained that the surgery will set my progress back a bit, but I'm positive in my heart and soul that I will bounce back. I'm so much stronger than what I was. He had given me a break in B-12 injections and I was only having to inject 3 times a week.  After my last visit he had me go back up to 5 times a week due to the fatigue I'm having.  Well, it was a nice break for my thighs while it lasted.

Gas Monkey (where they film Fast N Loud)
was on our way to the doc and we had time to
kill.  We popped in and snapped some pics and
picked up some t-shirts.

After the appointment we headed over to my neuro for a nerve conduction test.  They basically hook you up to leads and shock you to make your nerves react.  He did confirm mild neuropathy in my hands.  My thumbs have lost just about all strength. He said basically it's the beginnings of carpal tunnel and if I wear braces at night for the next few month I should get some relief.

I do not have to travel to Dallas for my next appointment.  I will be doing a phone consult with him which is fantastic news.  Travel days really take it out of me.  I usually am crawling out of the car into bed on these days.  My memory is getting sharper (at least I think).  The brain fog seems to be lifting.  Just pressing forward like a good little soldier.

Drum Roll..Test Results

I haven't had a chance to sit and concentrate on here, but I received a call last week from my neurologist with my 72 hr EEG, stress test, and 1 hr cognitive test results.  My EEG was normal.  Exhale.  Finally some positive news and I got to relax for a few days.  My stress test and cognitive test though just resulted in more testing.  I am pretty bummed over the news.  I now have to take and 8 hour cognitive test to make sure there is no onset of Alzheimer's.  I failed my first one in the processing portion.  I really think they set you up to fail on that one.  8 hours of puzzles and memory testing? Seriously? The stress test results showed hypertension, and my blood isn't circulating like it should.  I will have to have a venous Doppler ultrasound done for that. I will have my MRI done next week and still have the nerve conduction test to schedule.

I was able to do more the past weekend than I have done in sometime.  We spent the day at our cow pasture, then I went shopping for a bit and watched a movie with the girls.  Sunday was church and then I cooked a big meal for us.  I spent the better part of yesterday resting.  I woke up feeling very good this morning too.  We leave for our family cruise in just 2 days and that is where I will get a lot of relaxation.  The warmth alone will help with my cold bones.  Last week my circulation was so bad that my legs and feet were asleep for almost 3 days.  I had this strange sensation of cold water running down them as well and horrible night sweats and bad dreams.  It's fair to say that my co-infection Bartonella is wide awake and my body is attacking it like it should.  I'm feeling positive despite the setbacks in the news mentioned above.  It's all about taking care of myself at all expense now.

Giving Up

I have felt like non-stop poop for a week now.  My husband and his friend recently became business partners and now are running cattle.  We had to head to the property yesterday so he could do some mowing on the property.  It was nice to get out and be in the warm sunshine.  I actually was blessed with a good day yesterday.  I only had a few episodes of illness and pain.  It came in like a wave and they lasted for about an hour each time.  The fatigue is one thing I just cannot shake.  Then when I get a chance to nap or sleep I cannot get comfortable enough.  This morning the headache and neck cracking is back.  I have never had my neck pop before.  Just since starting treatment does it do this.  It's so gross to me.  My toes, feet, hips, elbows, finger have popped for years.  I have watched people crack their neck and it is so yucky to me.  Like the fingernails on the chalkboard feeling.  Now it's happening inside my own body!  Ebby Jeeby.  (That is jibberish for scary I think.  Something my mama has always said.)  I give a whole new meaning to pop locking and dropping.

We leave in a few weeks to take our kids on a cruise.  Two to be exact. I'm looking forward to the rest and sunshine.  Even though I rest at home a lot these days it's just not the same.  My brain will get a break.  Not to be confused with my mental check outs I tend to take when talking to my friends and family.

Next up neuro appointments and blood work galore.

I am not giving up though.  That would be too easy.  No way am I going through all of this only to give up.
I'm ready to run circle around people already.

Walk Run or Push Me

Somehow it is happening.  Texas is hosting it's first annual Lyme disease walk/run on March, 2 and it happens to be close to home for me.  It is being held in Houston at Discovery Green.
I am so excited for this for several reasons.  It will help raise awareness in our area and state, it put all of us Lymies into contact with one another, it allows the family to interact with one another, and it will raise money for research.

I have put a team together called Shaken Not Stirred and anyone is welcomed and encouraged to join.  Also if you look to the right of the page there is a box that you can donate any amount and the proceeds go to Texas Lyme Disease Association and the Tick-Borne Disease Alliance.

If you are interested in joining us for the walk/run and I know you want to. Here is the information.

GIVE LYME THE BOOT

I know it is early, but it is one day and so many of us can not thank you enough already for dedicating your time for our cause.

Taking The Good With The Bad

I hope every one's holidays were fun-filled and Santa brought you what you all wanted.  I did have a rather relaxing Christmas break.  I am learning more and more how to balance my time and energy.  Eating better, napping more.  If I spend one day over doing it I am in bed for days.  I am trying to juggle that better.  Family and friends have really stepped in to help more as well.  I could never express enough gratitude to all that have helped with the house, kids, food, or travel.

It's been a while since I last updated everyone.  I know there are those of you that may follow the bits and pieces on Facebook or Instagram.  My last blog entry was right before the doctor visit which I started the aggressive treatment. I was placed on 3 antibiotics while still continuing the anti-seizure meds and injections and supplements. Just as before, there are good days and bad.  The bad seem to be running into each other more and more.  I also told you that I would be visiting with a Neurologist familiar with Lyme.  She ordered all types of tests after confirming that I do have nerve damage.  Now the long process of finding out how much damage there is exactly.  We needed to get past December because of the costs of it all.

I flew to Dallas last week for a 72 hour video EEG. They made sure I was very comfortable.  I slept mostly which is what they prefer.  When I flew there, it was my first time to fly alone.  I think I did better on this flight than I ever have before.  I feel like such a big girl now.  Thank goodness for facetime.  I really missed my family.

The day I was released was the same day as my doc check-up.  My husband drove up the night before and got to the hotel about 1AM.  At 8:30AM I was finally allowed to take the wires and tape off my head.  After not being able to bathe all week, or wash my face and hair I was like a kid waiting anxiously for Christmas morning to arrive. It's a week later and I'm still washing goop out of my hair.

Doc appointment went well with my LLMD.  He added yet another med to start really attacking my Bartonella co-infection.  Can't kill the Lyme till the Bartonella is gone.  I'm on a total of 4 antibiotics now. Good times.  Good times.  I am also still maintaining a gluten-free diet and a diet full of fresher foods mainly fruits and veggies.  I even did a 21 day cleanse in December where I ate nothing BUT fruits and vegetables.

After my LLMD visit we went by the neurologists so that I could do a resting stress test and a cognitive memory test.  I learned two things. I can't hold my breath like I used to and I have a really bad case of CRS.  My reaction time has slowed horribly.  My cat-like reflexes are failing me.  I still have some 8 hour testing with the neurologist and an MRI.  I will see her in March to get the results from all the testing.

On our way home we had a tire practically blow on us.  It unraveled.  Blessed, we were only about a mile away from an exit into Corsicana.  We were able to find a tire shop to change it for us and my husband didn't have to do it himself.  It would have made for even a longer ride home.  Our trips are never dull that is for certain.  They are very taxing on us both and give us plenty of adventure and conversation for on our way back.

Now I want to share with you some good news and bad news.  I don't know about you, but I prefer to have my bad news first so I can get it out of the way, and since this is my blog....
Bad news first. I have been sick as a dog.  Good news.  I have been sick as dog.
Remember the whole thing with Lyme.  You have to get sick to get better.  Well, I am officially full blown herxing.  I couldn't even stand up in church the other day. I have brain shivers, hot and cold episodes so bad, shakes, breathing problems, water retention, sore throat, sick stomach, Bell's Palsy, and the arthritis pain and headaches are horrific.  My husband even had to carry me the other day from our bedroom into the living room so I could visit with everyone.  I am now on day 4 of my herx and was told it could last days or even months, but my doctor did tell me to expect it for about 5-6 months.  I know the flu is running rampant right now, so this will help a lot of you to relate.  Imagine the way you feel about day 3 with the flu, but you function.  You still get up, clean, cook, drive, visit with family and friends, go to church, go to your children's functions and sports, grocery shop, and the hardest part smile.  That is what I feel like everyday and have for years.  Now it is worse.  I know he will freak a little because he won't know this until he reads the blog, but I almost asked my husband to take me to the ER the other night.  The pain gets so horrible.
How is any of this good you ask?????
The pain means the Bartonella is dying off.  When our bodies hurt it's because our bodies are working to fight.  Herxing is the same reaction.  My body is working to kill the junk in it.  A huge toxin die-off.  There isn't one organ in my body that is getting a break right now. The sauna and Epsom salt baths help give me some relief.  So, this boils down to the old saying, "No pain, no gain."
I could use a LOT of gain for 2013.