I'M ALIVE!

This will be a long post.  I have felt impressed for a while now to give an update and assure all of you readers that my absence has been because I AM ALIVE.  That means I am BACK! I love being back.
I can finally be a complete mom, wife, friend and functioning part of society.

Since that day 2 1/2 years ago when I did the "happy-dance" in my kitchen, shouting, "I feel good-na na na na na na naa", I have only had 2 minor setbacks requiring treatment.

I've been in "remission" from Late Stage Disseminated Lyme Disease now and various co-infections and disorders for about a year and a half.  What that means is symptom free for 1 1/2 years...

Don't be fooled by the face of Lyme Disease!  If you'll recall, the picture I first posted of me when I had full-on Lyme symptoms is for all intense purposes the picture of health (from the outside).  Lyme disease victims often look well, but are dying on the inside.

The last symptom to leave me was eye pain. You might be thinking- okay.. I could deal with that.  Eye pain with Lyme is the feeling of having your thumbs pushed firmly on your eye balls.  Try it for 10 seconds and then live it 24/7.  Not fun.

Symptoms I still get now and again:
Fleeting numbness on my face and pelvic floor, occasional numbness in my legs, arms and hands and  headaches.  My diagnosis of  Lyme was Neurological- so even though I know the bugs are still around, I expect them to show up where they left off.

Consider that since the end of 2006 I was chasing daily infections like a wildfire throughout my body- UTI's, ear infections, headaches, severe exhaustion (after a full nights sleep and 3 hour nap), stuttering, unable to sustain my weight, unable to walk without holding on, confusion, dizziness, no appetite, numbness. With no diagnosis, I was left to continuing chasing and chasing bugs.

How do I know I have turned a corner?
While there are no guarantees with a disease like Lyme, last weekend, I was on my feet for 8 hours making and serving 20 batches of homemade soup for a large function of 200!  No nap. No rest time. No symptoms.  I did this two weeks in a row for 2 separate functions!  Although I had wonderful helpers at the functions, two years ago, I couldn't have made even a small meal for my family of 6.  I couldn't walk to the edge of my driveway to get the mail.  I was just too tired and weak to do it.  I have also been walking again. I am up to about 15 miles a week or 3-4 miles every other day.

What have I done now that works? 
My regimen now consists of a "small" pile of supplements in the morning including:
Thyroid-prescription
2000mg Vitamin C
5000mg Vitamin D
probiotic
Max Gxl-product I distribute:  www.max.com/255092
Cellgevity-product I distribute
ADR- Pure Encapsulations
Eating healthier
Sleeping better
Taking a personal inventory daily

At bedtime I take an even smaller "pile" of supplements:
Calcium
1000mg Vitamin C
HRT
primrose oil

What I wish I had done and sooner:  
I have an amazing doctor!  Dr. Dee is patient and listens to her patients.  So much so that stubborn me got away with "doing it my way" until symptoms I had spun almost out of control. The number one thing I wish I would have done: start Lyme treatment sooner. I could have been better sooner and avoided a lot of cost and time.

What has contributed to my wellness:

• Sleep:  I finally allowed myself adequate rest- daily.  I slept in as long as my body needed it and took an afternoon nap for as long as my body needed it.  Sleep is key to wellness from Chronic Fatigue, EBV, Adrenal issues and of course Lyme.
• Daily Hydro-therapy: Hot showers followed by cold compresses, hydrogen peroxide baths, Epsom salt baths, saunas. CAUTION: DO NOT USE THIS THERAPY unless you have consulted with your physician.  Hydrotherapy is a fantastic detoxification method- so much so that you may not be prepared for the "die-off".
• Supplements: take what your body needs, but be reminded that Lyme is a tricky and will suddenly and without warning disregard what "has always worked".  Be flexible.  the 2 supplements that I continue to take that WORK are Max Gxl and ADR.
• IV Therapy:  Had I not started IV therapy at the aggressive rate, when I did, I can't say that I would be alive today.  My body was just not responding to the supplements that I was taking.  I wasn't getting better.  IV therapy- 4 days a week worked.  I did this for 6 months.  I was also taking 6 oral antibiotics at the same time.You really have to flood those bugs!   AGAIN-  YOU MUST CONSULT WITH YOUR DOCTOR before trying any of these therapy methods.  

While in IV therapy, 2 of my dear IV- friends passed away.  Lyme disease is destructive.  It kills a person from the inside out.  Cells have no power because Lyme takes them over in populations that flood the body.

I am alive!  I love my Life!  I love my family for believing in my ability to recover when I had lost all faith.  

I love them for supporting me when I didn't "look" sick, but couldn't get dressed for the day or brush my hair because it took too much energy.  ( I used to sit on the edge of the bathtub to dry my hair because standing took the breath out of me!)

When your body and mind are sick, my advice to you:

1. Get a doctor: One you can trust.  One that will listen to you.  Do what they say. Don't be stubborn.  Be patient and get on the path to wellness.
2. Patient means: willing to drop everything from your plate of "to-do" to get well.  I mean everything!  YOU are your first priority. (Ya- try telling that to a type A person!) That's why I didn't get better sooner!
3. Find a support group- if you have the strength to attend.  
4. Keep up with friends and  family. You will be well again, my friend.  You will need them again, and they will need you.
5. Accept help- housecleaning, meals, running errands, taking care of kids.  This is no time to be a martyr.
6. Be True to yourself and recognize your limitations.  That's all I need to say about that.
7. Pray- Keep up your faith.  God will help you .  Trust in Him.

I have my life back.  Not sure how long it will last, but I am back.  I am full of gratitude.  I can honestly say, I did not anticipate ever recovering to the extent that I have.  It is a miracle to me.

Lyme Disease is mysterious.  It affects people differently and there is no 100% guarantee that any methods will cure you.  I know that I still have residual Lyme Disease, but I am so on it.  

Bye bye Lyme.  I hope I never see you again.

Christmas Baking, Lords of Leaping and Piping Hot Tea....

Every year I set aside a whole day with my best college girlfriend, Deanna, and we bake our heads off.  We start at the crack of dawn and by the end of the day we manage to have pumped out about 10 different delectable naughties.  Most of the concoctions consist of  sinful ingredients such as:  chocolate chips, butter, brown sugar, coconut and peanut butter.  This year, I thought I would store my sealed containers on my back deck.  It's about 35 degrees outside and thankfully the raccoon family that used to live in our backyard has vacated for good, so I didn't see any harm.  Last night I slept restless wondering if any critters would bother the treats and woke to find all well on deck.  Just this afternoon however, I heard munching outside the window and sure enough, a mama squirrel had bitten a whole in the side of the Tupperware box!  Talk about invasion of privacy!  Shees!

That got me thinking about the 12 Days of Christmas Surprise that I have been the recipient of.  My husbands incredible goodwill. Some of these gifts are so tender, so personal.  I am humbled by his kindness and the detail and thought he has put to each days treasure.  Last nights treasure epitomized the whole essence of the activity for me.  His twist on the Lords of Leaping was certainly different than mine.  In fact, I hadn't the foggiest idea of what he would come up with.  So, as I opened up my computer last night, out came the index card and then a packet of papers stapled at the corner. For the next hour, I read through my watery eyes, my husband's thoughts on how his testimony of our Lord "Leaps" in his heart,  through 10 of his favorite scriptures. WOW.  Truly amazing.  I am blessed. 

Now I think I will steep me some Piping Hot Tea from my 11 Pipers Piping treasure of today..... (it was a stretch, but it works.) 
Cheers and Merry Christmas~!

Priceless Pieces and other Valuable Nuggets...

I found an exquisite vase at a garage sale recently.  It was marked $1 and I thought- what the heck?  If I get sick of it, I could always sell it and perhaps make a little profit.  Upon returning home, curiousity got the best of me. I looked at the artists signature at the bottom of the vase. Was it Tillin or Rillin or Nillin?  I couldn't be sure.

Imagine my surprise when my little vase with the lovely dancing ladies popped up on a search.  Turns out it was created by artist Polia Pillin (1909-1992).  Born in Poland, Pillin immigrated to the US and made a successful career as an artist.  Her art today fetches a great deal and the value of my vase neighbors in the market of $1200-1800. 

What a find!

Isn't it interesting the values we place on our stuff?  Moreover, I marvel at how much stuff we actually acquire! There are some things in life that you just can't put a price on however. I've listed my top 3. 

My priceless stuff:
1. My faith
2. My family
3. My Health
...(and down the list somewhere, in some silly way, I might add my little Pillin vase)
 
May you and yours have a joyous Thanksgiving holiday!
To Wellness,
Maryalice


As the holidays sneak upon us, let us all take 5 seconds (or more) to think upon the things we place values on... even the stuff that we value priceless...

Lyme Bites and other Sad Tales and Farewells

• I walked into my doctor's clinic today only to receive the bad news. Johnny died. No Not Johnny, I thought.  So unfair.  I recently wrote about him in my blog- We were IV roommates.  Lyme really bites. When I left the clinic the words that came to my mind were- "Johnny goes marching home."  I know that without a shadow of a doubt that Johnny will be welcomed home and will talk and walk again.  Bless you Johnny.  You will be missed.   

• Other sad news- my sweet friend Sarah passed away on Friday.  A more amazing woman would be hard to find.  She suffered for the last 2 years with Multiple Myeloma. Her wonderful husband and 6 beautiful children will be most at a loss not seeing her smiling face and feeling her daily courage.  I will miss my dear friend and I have a lump in my throat and tears in my eyes just thinking about her. Good bye sweet Sarah.  The Heaven's welcome you and you are now in our Father's arms.

• Even though I am in treatment again, I know it will only be a short time.  I have been blessed.  I thank my Father in Heaven daily for my life, for my family and friends. 

• One of the things I am most thankful for is Max.  It has given me a chance to live again.  Please have the courage to try it for yourself. www.max.com/255092 

  

Blessings to you for a marvelous day.  It's a great day to be alive!
To Wellness,
Maryalice
 

 

MY LYME FRIENDS

Four years ago I didn't know what Lyme disease was, let alone that I would have Lyme friends, or lymies.  In the world of Lyme disease, I suppose it is much the same as the world of any disease.  Those that you meet within your circle of recovery become your friends. 

On any typical treatment day, I might sit in the IV room with C, S or J one day, or K and E the next. We all had a story.  We all had been bit at one time in our lives and some of us didn't even know it. Most of us had nothing really in common except being bit.  Some of us had IV's with 2 grams of rocephin, some were just getting started with 1 gram.  Some had DMSO mixed in  and smelled of tomato juice or garlic.   Others came for a bit of energy and got a Myers Cocktail. We all knew what we needed and we all wanted out of there and done with Lyme as soon as humanly possible.  None of us had anywhere to go. All of us had been robbed of our lives. 

Some had IV's wrapped in foil to preserve the ingredient.  Others had chelation drips, Vit B or C drips, or Hydrogen Peroxide drips.  Some got stuck 2 or 3 times, if they couldn't find an unused vein, or if they just needed 2 different drips.  Some brought home-movies for the 2-3 hour wait- others music. Many came and hooked up for a much needed nap.  There were lavender and flax seed hot packs, camouflage band aids, rubber tourniquets and plastic surgical tape.  Some lymies had babies at home that in turn were infected with borrelia. Others were business owners, husbands, wives or parents that used to have a life. Some couldn't be understood because their speech was affected.  Others had rashes or couldn't walk.  Some were 16, others 50 but looked 80. 

One of my favorites was J.  He shuffled in, slumped down in a rocker-ankles the size of tree trunks. His knees and hands rattled away. He chatted to me in garbled phonemes. Turns out that he was diagnosed with Parkinson's originally, but his treatment for Parkinson's by another doctor only exaccerbated the Parkinson's. Five years ago he was a regular guy working in a mill.  A simple lab test discovered Lyme Disease, and now it may be too late to turn the ship around.  Progress is slow.  One IV at a time. ((update... Johnny passed away from Lyme...)) 

One day I met the mirror of my new life.  I sat there, hooked up, staring at my Lyme friend that had Lyme induced ALS.  His speech was limited, due to dysphasia- impairment of speech due to neurological brain damage. His gait was slow and shuffled.  He looked at me with his tender eyes, unable to speak and I just wept. ((update... Ernie passed away from Lyme...))

There are lots of Kleenex's in the treatment room. 

I love my Lyme friends.  I know they will always be there if I ever need them again.