“Blessed are those who can give without remembering and take without forgetting.”- It's Humbling to be blessed with so many that have given their TIME to me!

I just wanted to share this quick little message of hope and thoughtfulness for the day- as they are shared with me (via email).

Words to live by for sure.  Read them a couple of times, because they are powerful words that speak profoundly to remind us to give generously and without a lot of pomp and circumstancen or the expectaton of being thanked.  The best gift of all is one that is given annonymously and with a grateful heart for all the blessings we have.   We should always be grateful for all that we are blessed with.  I certainly have much to be grateful for- including all my 'IV Chicks' that have given so generously with their TIME to and TALENTS to take care of me (spoil me actually) on treatment days.   It was more than I had imagined that anyone would sacrifice and do for me and it is truly a blessed and humbling experience to have that much of 'people' to be there for me/us in my time of need.  I can only hope to be able to pay the generosity, sacrifice and kindness forward that they have given to me. 

I've listed my 'IV Chicks" before, but while they ask for no accolades and or credit, the flip side of the thought of the day applies to me- I am making sure that I don't forget all who I take and receive from.  I have a very generous heart to:

Michele Auchter and her two friends Renee and Nikki
Beth Hess and Susan Moore
Stacey Lemick

While they seek no accolades or any kind of recognition, I still wanted to give it to them, because they are here week after week when I am in treatment, despite the chaos and obligations of their own lives- since January!

Then there are all the people that have made meals- Denise Brennaman from my church gets the trophy for most meals made right after Cathy Florimbio who has provided dinner just about every Wednesday since February.  Actually Cathy Florimbio gets much of the credit for getting ALL of the volunteering going and organized.  She set up this Blog for me (THANKS CATHY!  A great place for me to freely ramble as I do best!) AND the Volunteer Spot where all the volunteering is coordinated by easily communicating the needs to all the friends and supporters from my church that have signed up to help, and providing an easy way for them in turn to sign up to help with that activity.  Since I don't drive- I need an awful lot of 'chauffeurs' to take me to all my appointments and errands etc.  KEN POINDEXTER, my new 'lymie friend'- fellow 'slymed with lyme' buddy- takes the first place trophy for driving me around the most.  He is truly a friend and saint as he even took me SHOPPING for a  dress for my cousins wedding!  Something most guys have NO INTEREST or PATIENCE in doing!  We had fun though playing our own version of 'Say YES to the DRESS!' and it was very helpful to have someone who would HONESTLY tell me if I looked like a blob in the dress or not- or really more like I am pregnant as heck- which of course I am not.  But thanks to my body storing fluid and packing on lbs to protect my body while its going through IV therapy (plus all the drugs that cause weight gain) I've literally gone from a size 6 in November to a size 14/16 at present.  It has been a lot to adjust to.  I realize a lot of people are struggling at this size everyday and can only dream of being a size 6- I am one of those now too and I sympathize greatly with the challenges that this additional weight brings to just everyday living.  It certainly doesn't help with my fatigue and stamina!  So anyone, back to dress shopping- NOT EASY when you are looking the way I am lately.  But we managed to find something that worked, and 3 hours and another few hundred dollars in clothes later (not to mention that embarrassing trip to the 'unmentionables section to get some much needed items to help the dress look reasonable on me!) we were finally on our way - Ken was FREE from the twilight zone of Macy's.  Admit it, its a lot like Vegas.  You totally lose track of time, everytime you finish in one area, your drawn to another due to a sale or the sudden recollection that you need something else that you've forgotten to put on your 'to do' list.  Ken really has been a trooper taking me around to all my appts AND just hanging out with me getting me out of the house- and its been great.   I've made a new LYMIE friend, someone who REALLY understands what I am going through, AND I've gotten around to all the places I need to go.  On top of all that- just as an added bonus- since Ken has lyme too (and unfortunately for him I forced him to accept that he has a flare up again to contend with and stop denying) we've started going to Accupuncture together and he even goes to the same holistic practitioner (Linda Potts, Healing Waters) that I do and seems to like her so far!   So its been wonderful to not just have a chauffeur, but a new friend who understands my daily ailes and complaints- and doesn't think I am a wuss or just a complainer!  AND, I imagine one day I will be returning the favor as I get better and Ken seems to get worse, he might be needing rides and other things from ME when he gets further into treatment or is perhaps cut off from driving!  We joke now that we are the 'lymed leading the lymed'- and perhaps we BOTH should be cut off from driving, but so far he hasn't hit anyone or killed us- so we're doing good!  JUST KIDDING! 

But being cut off from driving has been a very difficult thing for me to adjust to- not being able to just jump in a car and run and errand or go somewhere when I want or need to- that's a Freedom that most take for granted, and Ken has truly made the loss of that ability easier because most of the time he's there and available for a needed ride- and that again is a HUGE sacrifice and gift of ones TIME and I will certainly never forget his kindness and generosity- and can only hope to pay it forward one day given the chance.

So inspired by the 'Thought of the Day' I got recently, I thank all the people who have been so very kind and generous with me in one way or another to help us through this very difficult time.  I wish I could name them ALL here, but I don't think I even have the complete list yet- but am working on it!  In the meantime, here are some other wonderful people who have gone above and beyond the call for help to me and my family!  Please keep them and all the others I've mentioned in this email in your prayers to bless them in return- as they have blessed me!

Liz Parotte (Holy Family Catholic Community Church)
Teri O'Neil
Jim Grothe
Ann Massey
Becca Thompson
Lori Benedetto
Stacie Lemick
Sharon Baharoff
Mercedes Loudermilk
Laurie Szukalski
Vivian Hunsley
Jeanne Smith (help with rides)
Robin Biser
Kathy Reese
and so many others!   THANK YOU TO YOU ALL!  And God bless you as he has blessed me with YOU!

Blessings,

Mary

First the Flu, then the big "D", then a violent reaction to a new seizure med- WHAT NEXT????

Apart from the saving grace of my Holy Spirit miraculous moment, I really had a rough couple of weeks around Easter (I know I am behind!) and I realize that I need to document them before I forget them entirely. 

First there was the Flu that ruined our Great Wolf Lodge/Easter Plans.  Ajay and Shane were still getting over the remnants of the diarrhea part of the flu when we left to go, I assumed I managed to skirt it since I'm on SO MANY DRUGS and stuff.  BUT, apart from a nightmare of a morning we were supposed to leave (I almost OD'd my son Shane on albuterol in the breathing machine- bad mommie) so he was wigged out for awhile and we didn't leave till he was feeling better.  Then we hit ALL the traffic possible heading to Williamsburg I guess and a 3 hr ride took over 6 hrs.  We were all ready to jump out of our skin.  So now we arrived around dinner time and not the mid day as planned leaving us barely enough time to do a little MagiQuest (WAY COOL game with wands and enchanted props around the hotel for the kids to do quests etc. with) and then eat dinner and call it a night.  Later that night when I was almost done with my lactate ringers, I suddenly got horrible chills- i was freezine to the bone!  Then I got fevers and horrible body aches and by morning it was clear that I had the flu.  So Ajau and the kids muddled thru breakfast an dthen went to the water park only to return about 2 hrs later as Ashton had a fever and was clearly getting the flu as well.  What a group of sickies we made!  Oh- and on top of it all, they had screwed up our room and while they did get us a room in the end, we were asked to move the next day- but they offered us a discount to sweeten the deal/compensate the inconvenience.  SO here I am in bed sick waiting for the call to move rooms, and here comes the whole crew back and Shane and Ajay were STILL dealing with a bit of diahrrea here and there!  Josie was the only healthy one really- so far at least!  So I told Ajay to go down and just ask if we could get out of our reservation altogether and just go home.  As I hoped, they were so overbooked, they were happy to see our sick asses go- and not only didn't charge us for the next night or late check out, but they applied the discount to the first night that they had offered to move rooms.  Not bad consolation prize.  Suffice to say we owe our kids another trip to Great Wolf Lodge- what a bummer (KIDDING- we LOVE THAT PLACE!).  But we weren't about to go to my moms and bring the disease to them!  They are too old to be getting sick etc, so we had to stay home and finagle throwing Easter together, baskets and all since my mom had made them up for me (she was a little sad/ticked off about that- what to do with all the stuff she got for them- I said CHARITY!).  Come Easter Sunday, hours after brunch at Brewers Alley (really good actually), just when I thought I had escaped the GI demon part of the flu since I take so many probiotics each day, it hit me and hard early Sunday evening- just when we were getting ready to do popcorn and movies together as a family- FIGURES!  And I didn't just get the big "D", I got it BAD- like the worst in my life- worse than the prep I had to do for a Colonoscopy- go figure!  And by the end, there was nothing left in me to go and I guess in a whacked way it was a much needed colon cleanse!  Sooooooo.......By Tue I was feeling pretty worn out, weak and weary and frankly in the depths of my 'pit of despair'. 

I was crying a lot, which I guess I needed to do to just get it all out.  And of course when I was out under my weeping willow tree one afternoon (my spiritual 'zone') Ajay came out and assumed that he had done something wrong.  It took a lot for me to open up frankly- it has taken a lot for me to be so open in these blogs (although there are probably more for me than anyone bored enough to read the novels) let alone to be open to my husband in a 'I'm emotionally at my lowest and yes I probably just need you to support me) way which is a form of weakness- and I am not weak.  Anyhoo- I did force myself to be open and admit that was what was going on, and we ended up snuggling on the couch under the tree- no talking- just me weeping and he holding me.  But then I looked up and was watching the branches sway in the wind (kind of like the trees in Phenomenon and how they relaxed John Travolta) and it was calming to me and I was able to collect my thoughts enough to ask the Holy Spirit- "Will this ever end?  Is there an end to all this and will I actually be better again?  Will I ever be able to once again take care of my family as I used to?  Please give me a sign just let me know somehow that I need not worry that I am broken and there is no end in sight- will this ever end?".   Well, wouldn't you know, less than a minute later, Ajay suddenly felt compelled to give me his 'rah rah' speech assuring me that I WAS going to get better, that I am almost through the treatment regimen and I AM getting better- even if I don't see it or entirely feel it yet, and this is all temporary, the weight gain, the nanny- one day everything will be back the way it used to be.  Well talk about a rapid response to my question!  I was in awe and amazed.  I asked Ajay what made him say all that just then- and he just said he felt like I needed it- like he was feeling pushed to do it right then.  Crying again I told him how I had JUST ASKED THE HOLY SPIRIT for a sign and low and behold, Ajay GAVE ME MY SIGN a mere minute later- now that's fast service!    So THAT was quite spiritually renewing and fulfilling.  I truly felt lighter and my emotional black cloud just seemed to lift up and float away- and it felt great!  I felt like a new person and my outlook was back to being upbeat and positive- the strong and optimistic Mary was BACK!

And THEN.......Wed April 27th - the very next day, well that night was a literal horror.  I guess my body didn't like the new seizure med tegatrol my lyme doc had prescribed and I was slowly ramping up on, because about 2 hours after I took my evening meds with 600 mg of it, I had a violent reaction.  I could barely see, I couldn’t walk, and I could barely hear anything except theoverwhelming and loud ringing in my ears!   Poor Ajay- he literally had to carry me to the bathroom  after I got up the first time to go to the loo and totally collapsed and hit my head on the side table.  I bruised my temple and my jaw was sore for a few days, but other than that it just completely freaked Ajay out and made us realize I had NO CONTROL over my legs!   Then I got fevers and chills and threw up so violently (and multiple times) that I burst a blood vessel in my eye.  Plus I had nausea and the head/body disconnect thing a bit so I was petrified some of it might be due to low sodium, even though my last results were up to 128 (normal is OVER 135- I've been as low as 125 and was at 107 when I almost died in the beginning of December and back in late Aug/early Sept in FL).   At some points I really thought dying was a good option and was praying as much as my brain was able to.  It was HORRIBLE and I hope I don’t have ANY OTHER NIGHTS/EPISODES like that one.  The next day was only slightly better.  I felt like my legs were jelly- very little control.  The ringing was down a bit, but the nausea was still pretty bad and I just slept most of the day.  By evening I was able to sit up and try a little food- peanut butter toast, some apples and a banana was it.  The thought of eating anything else was nauseating.  Oh- and I had to cancel the SPA EVENING I had planned WEEKS EARLIER with Margie Harp thanks to this medical mishap!  I was so bummed for BOTH of us!                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

The next day (Friday) was infusion day again- and Alison/Jemsek team said that it was also possible that this was a herxing reaction to the Levaquin since it is so strong.  I am betting on the tegatrol and we’ve been ratcheting back on it to the lowest dose- to get off of it altogether was my hope, but apparently not!  My nurse Alison was the bearer of bad news- I have to stay on it at the lower level.  So I guess we’ll see. 

                                                                    [recent update- still on the lowest dosage of the tegatrol and no more 'incidents' like that one thank GOD!  But I did have a seizure on May 11th- Ajay's birthday- a whole other blog/story for sure since Ajay almost died that day- and tonight - earlier of course since I am now able to write somewhat coherently.  Actually I wrote most of this sometime ago but never finsihed and published it- so I am finally doing that!]                 
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           But there have been other amazing moments.  I had this wonderful lady/home chef make me a bunch of gluten free meals to help me to eat better without having to stress over cooking.  She made meals for me last summer as well.  Well she is very religious, and after we put all the stuff away, she asked if we could pray together and we held hands as she said a wonderful prayer for me/with me.  That gave me a little boost.  Then I dragged myself to get my hair cut Friday after my 'medication mishap' and my stylist (have used the same one for years so she knows like my entire life of course!) told me that a week ago or so she was cutting a lady’s hair and somehow got on the topic of lyme disease and the lady said that there was someone at her church who had lyme disease really bad and that she and everyone were praying for her.  My stylist asked if she was talking about Mary Patil- and she was!  So I am constantly getting reminders that I have a TON of people praying for me and its humbling and encouraging.  Somedays its just not enough I am afraid- at least for the past month or so.  But as you can see- I am bouncing back and I have survived the 'pit of despair' and have not only made my way out, I am sitting on the ledge throwing pennies into the pit making wishes and giving thanks!

I know I’ve been down right rotten about keeping in constant contact with everyone as much as I want to and promised to.  Please bear with me.  My schedule is just so much more busy than I had anticipated.  Between appts, aquatherapy, errands and kid stuff (I do attend more and more of it as I feel better) I just seem to be always on the go!    And sometimes I am DAYS behind doing emails- not always the best way to reach me I am afraid- unless you are patient and have time for a response.  if not, CALL ME (like Blondie Sings!  CALL ME- YOU CAN CALL ME ANY DAY OR NIGHT- CALL ME!  

I do want to give a shout out to all my IV CHICKS who come out every Mon, Wed & Fri of treatment weeks and take care of me setting up my IV therapy, oral meds, packing pills for the week, making shakes etc. etc.  Beth Hess, Michelle Auchter with her friends Niki and Renee and occasionally Susan Moore and Stacie Lemick (who did it today actually) are my HEROES and they give up an aweful lot to be able commit to coming up one day EVERY WEEK to take care of me- and I am truly humbled by their generous gift of time and talents to help me!   

 So HAPPY BELATED EASTER!  I hope that yours was uneventful and a blessed day with family and friends.  Don't get me wrong- ours was still blessed, it just wasn't what we had planned is all I am saying!  If you ever want to take the family to an awesome indoor waterpark vacation (especially when its cold outside) ask me about Great Wolf Lodge and I'll fill you in on ALL the awesome details- AND probably have a great discount as I often get them for being a returning customer.

Now BEFORE all this wonderful madness- I had a number of seizures, including one on April 15th-the day that Ajay’s mom was leaving after spending a week with us - and I managed to go seizure free all week which I was so grateful for because I knew it would freak her out!  And unfortunately it did, and she was a bit upset.  But I managed to come downstairs before she left with Ajay’s aunt so she could see I was okay (although I wasn’t totally recovered yet).  It was frustrating because I was literally showing her movies of Shane doing gymnastics one minute (while doing lactate ringers) and the next I feel a seizure coming on!  So I told Ajay I was feeling weird/perhaps one coming on, then I laid down on the coach, and sure enough one came on.  It lasted over an hour too, and was a bit different from the rest. 

Actually all the seizures for the weeks prior to April 15th had been a bit different-more emotional and less shaking as before.  I have these weird dream clips and am like acting out with my hands.  Its kind of weird.  And I feel like there’s something in my head that I want to shake out, and I usually get a migraine. 

The Sunday before that (during VACATION WEEK- March 27th!) I had 2 seizures back to back- which had never happened before.  And then I had one everyday Mon-Thurs that week and then finally got a break- and that was  ALL during my VACATION WEEK from meds!

But after all is said and done......Its been a rough few months, probably the most difficult, so it's been hard to document/update this blog- but this one sure covers the bulk of it!  And now i think I am starting to come out of the 'valley of darkness' and find the mountain of miracles on the other side!

Keep up the prayers and know that while things have been rough for me these past few months, there are brighter days ahead now....and life could always be worse!.  So never forget to pray for those who are less fortunate than me and are also afflicted with this terrible disease- or any other illness or cross they may be bearing.at this time in their life and feeling the heavy load of the weight of their crossl

 

Love and blessings,

 

Mary

Just ask the Holy Spirit-and an answer you shall receive.....

Its been a very long time since I wrote in this Blog.  Its been a very dark time in my treatment and its been hard to get motivated or even collect my thoughts really to write something.  And worse, it would undoubtably end up being very negative and dark.  I've been in a dark place for sometime now, but now I can feel myself coming out of it, slowly but surely.  And all it took was me asking the Holy Spirit (more like pleading for guidance and answers) to assure me that I WOULD have my life back one day.  That I am going to get better and get my life back- new and improved.

I didn't feel like I'd lost my faith during the last few dark weeks- but it just didn't seem enough at times to keep me up and feeling optimistic and centered spiritually.  I felt like I had lost my way-yet my faith was still there.  Its a complicated mix of emotions and faith that I doubt that I could explain.  But really don't need to now because I am climbing my way out of the 'pit of despair' that I feel I have been stuck down in, and I see things clearer again and I feel stronger emotionally and spiritually. 

And all it took was asking the Holy Spirit - and getting the answers that I needed to hear.  Not that I hadn't heard these positive encouraging words before, I had.  But I guess it was all about me being ready to ASK and that it had to be me ASKING to hear the answer in my heart and in my soul.  It was a special moment between Ajay and I and the timing was uncanny.  You know we have to keep our eyes and ears open for you never know WHEN or HOW you will get the answers to the questions you ask.  But I know that today I asked the questions (okay- maybe it was more like a desperate plea) and Ajay himself spoke for the Holy Spirit and told me what I needed to hear- and I was ready to hear them because I know they were coming straight from The Holy Spirit.  Not that its meaningless when Ajay has said encouraging speeches in the past when I was wallowing in the "pit of despair" but there's no doubt that there is a diference- and this was more powerful.  It woke me up and pulled me out of the pit- and I felt a dark shroud lift off of me.  I feel lighter and I feel the peace I had enjoyed earlier in this journey.

The last few weeks have been full of seizures, significant weight gain (due to the IV treatments/meds) and an emotionally dark time.   The seizures were frequent, often and some were very long in length.  They were pulling me down into the 'pit of despair' and there were days that I just wanted to cry.  I functioned many days when I needed to- thanks to '5 hour energy' and raw determination, and I always put on a good front.  I am an expert at that.   Very few people have seen me truly at my lowest in all its rawness- and I promise that I will likely keep it that way.  But I think its important to admit that I have been at my lowest moments in this journey to get my life back and get better- to be back in control of my immune system!  And though I was at my lowest moments, and at times felt like there was nothing that could bring me back, the Holy Spirit once again came to the rescue and I am on my way back now- I am climbing OUT of the pit of despair! 

So hopefully someone else can benefit from that.  I am admitting the hard, dark truth- and its not pretty.  And yet, I am coming back with the help of the Holy Spirit- well really the entire Holy Trinity!  So NEVER lose your faith!  And even if you have moments of weakness, just remember to pray, ASK for help, and you WILL receive an answer!  You will get the graces and the help you need- you just have to be willing to humble yourself before God and ASK FOR HELP!

So once again this blog was started over a week ago (actually just after Easter which I got the flu bad including 'GI issues' like I've NEVER had, and was just starting to get better when this miraculous day with the Holy Spirit and Ajay happened.  But then the very next day I had a severe reaction to a new seizure medication and the experience literally brought me to my knees.  I will describe that 'adventure' in a separate blog to keep them focused on one event/time as much as possible.  So although a bunch of these are getting posted at once, you should be discerning from my endings in italics that the actual blog and events occured a week ago or more.  I will do my best to be more timely from this point on.  After all- these are for me as much as those that want to follow my journey.  So I need these for my journal anyway!

Thanks for taking the time to share these experiences with me.  I hope that you too have a Holy Spirit moment or some Divine Intervention in your life that moves you and reminds you that you are a blessed child of God and the Holy Trinity is there for you- just ask and you shall receive.......

Blessings,

Mary

HAPPY MOTHERS DAY to all my MOM Friends!

Being a Mom is a daunting job at times.  Especially if you have more than 1 kiddie and/or if you have a child with special blessings/challenges.  Now matter your situation, if you are a mom, then today is your day and I wish you a day you deserve full of sunshine, laughter, the company of loved ones and a day where you get to do what YOU want to do (and getting waited on hand and foot all day wouldn't be so bad either!).  I hope that flowers and chocolate covered strawberries arrived at your door at some point, and your hubby/children do their best to make you feel as special as you are and as appreciated as you should be! 

Special blessings are being sent your way! 

Love and kisses,  Mary

There's Blue Sky Days and Grey Sky Days, and then there are downright Black Sky Days- I'm having some of all of the above!

I have this little book- Bedside Blessings- that I try to keep up on and read the inspirational thought for each given day.  On March 18th it firmly reminded me that we all have a cross to bear - "we may not necssarily look as if we are bearing one, but we are.  Each of us has some area of pain and suffering in life.  The world around us would have us run from this burden- to resent it or hate it.  Instead we should- and I know this is tough for many to hear and believe- embrace it.    You know even I need this reminder now and then.  I KNOW and BELIEVE that this lyme disease is my cross to bear- and I accept it.  But I don't know if I can honestly say that I embrace it- certainly not everyday!

Its been a few weeks now since I last updated this Blog, and everytime I go to start an update, I get distracted by either complications in my treatment or with all the appointments I have or even all the 'to do's' that seem to pile up.  

Well I did get distracted AGAIN and never finished THIS BLOG either.  But it has such a powerful message that I wanted to share that I am posting it at this belated time so that I can share the message in hopes that it reaches someone else that needs to hear it. 

I do NOT question God why I am sick or why this has happened to ME.  I do NOT blame God.  I truly believe that this is my cross to bear, for whatever reason, and I am accepting it.  I might be struggling a bit still with the embracing part- but I think that it might mean to make the most of it, which i do think I am doing MOST DAYS.  And I am slowly but surely starting to get involved in the advocacy part a bit so that I can help to communicate to more people about Lyme Disease and give the TRUTH and educate people so that they can get a proper diagnosis and treatment- hopefully BEFORE it progresses to the neurological level as it did with me.  But there are alot of people out there getting diagnosed with things like fibromyalgia, chronic fatigue syndrome, MS and Parkinsons Disease and Alzheimers as well as some other psychological and neurological based conditions that may all very well be the result of undiagnosed and untreated Lyme disease!  One day soon hopefully we'll know for sure AND the CDC will FINALLY admit that Chronic Lyme DOES exist AND start to support and fund research for improved testing as well as standarized treatment that WORKS for patients and DOES NOT cost a fortune- oh- AND is covered by health insurance!

I know I am living a fantasy right now- and that's a tall order for a miracle request.  But this should be what ALL of us are praying for.  For the day after the CDC admits they are WRONG the world will never be the same.  And the journey to finally deal with Lyme Disease appropriately AND successfully will begin.  For this I pray.....

HAPPY MOTHERS DAY to all my MOM FRIENDS!  I wish you a day you deserve full of sunshine, laughter, the company of loved ones and a day where you get to do what YOU want to do (and getting waited on hand and foot all day wouldn't be so bad either!).  Special blessings are being sent your way!  Love and kisses,  Mary

Another Day....another seizure....but it sure is a BEAUTIFUL DAY!

Well it sure is a beautiful day!  A hint of Spring in the air- just enough warmth for me to wear a wrap, not a jacket, and to soak in the sun a bit on the way to another doctors appt. 

And yesterday was wonderful as my dear college buddy Dorri Gowe-Lambert drove all the way up from the Eastern Shore with new baby Landon to visit with me!  It was a great day- but not nearly enough time to catch up on EVERYTHING that has happened since we saw each other last.  So it was quite a surprise that I would end the evening with a seizure out of nowhere.  Certainly not stress induced- so I'm guessing its my body 'herxing' which is a reaction to the treatment- the spirochetes fighting back by release endotoxins that usually result in increased symptoms and discomfort- and its different for everyone.  So its a good/bad thing really.  And since I was having seizures BEFORE I started treatment, it makes sense that I would have them DURING treatment. 

Then Wed my treatment was going great and Susan Moore and Beth Hess (my nurse maids!) were about to leave when a seizure came on pretty suddenly.  I'd rate it at about a med/bad seizure.  So again, herxing or in reaction to the medication?  Not sure but I am NOT enjoying them- I can tell you that for sure!  But I just keep praying, and it does seem to help me to come out of them (when I can focus enough to remember how to pray!) and to recover quickly- at least that's what I choose to believe!

Last night I just got drowsy from the treatment, but no seizures- so there's no pattern/consistency for sure!

Today (Thursday) I start taking Flagyll again which essentially pops the biofilm that the spirochetes create to protect them in cell clusters.  The medications are hopefully penetrating the biofilm (why they use the meds they do) and killing them off, but then the flagyll pops the biofilm itself and then the neutraceuticals and the lactate ringers all work to flush them out of my system (the lactate ringers more than anything because its a saline flush).  I also added the Artemisinin to the nasty MEPRON (seriously- imagine THICK, neon yellow PAINT- and then imagine drinking it with peanut butter!)  YUCK FACE BIG TIME!  But both of those are working to fight the Babesia infection I have. 

This blog was from about a month ago- and so I can't really finish it, but I am publishing it for my own documentation purposes as well as for those that really want to follow my journey in fighting this terrible disease- in hopes that they are inspired AND learn something.  If just one person's spirituality is boosted from my words- then i have done my job for the day to spread the word and the graces of God.  The Holy Spirit is with me in this journey, I get validation of that all the time.  But this experience is NOT exclusive to me- you can have the blessings of the holy trinity in your life too.  Just ask and you shall receive.....

Blessings and thanks to everyone for the continued prayers and love I get from everyone every day!

Mary