Delinquent with the Best of Intentions

And so it goes. Another month has passed and I have let you down. Once upon a time, I was so committed to writing my blog that I received letters of thanks for sharing my daily experiences and innermost feelings. And things have changed. But it's important that you, as my readers and friends understand that the less frequency with which I write is a sign that treatment does indeed result in progress, that life does begin to improve, and that writing daily entries no longer becomes necessary.

What is important for me to convey to you is that I have not abandoned you. In fact, you are more important to me than ever. I have spent the past several months doing 70+ interviews with local and national radio stations, newspapers, magazines, and television appearances. I do this because I have realized that my book has made some noise. It's rocked the boat and as you have gathered by now, I am not one to sit quietly and allow a collective group off arrogance and greed who have derailed my life get away with it as they do the same to you. And I sure as hell will never allow this to happen to my child. And so while you may not have heard from me on the blog, please do click "HOME" above and take a look at a taste of what I have been up to in the media. Of course I cannot put everything up, but we are keeping up as best we can.

They say that when in crisis one goes into fight or flight mode. Suffice to say I am in full on FIGHT mode. That said, I have consciously taken on this task with a graceful tone, attempting to bring this scientific and medical tug of war back down to a human level. My goal has been not only to help educate the public about the reality of Lyme Borreliosis Complex, but to perhaps grab the ear of an allopathic doctor who might need to eat a piece of humble pie and be reminded that all of us are human. When patients come to their doctors in pain, be it physical, emotional, or mental, it is their responsibility to and privilege to treat that patient, not an entitlement. It is my hope that someone out there might hear my story and reflect on some puzzling patients and perhaps want to learn some more about which I speak and at the very least, treat us like we are humans with hearts, often broken by having been beaten down.

I am proud to say that I have been in contact with a couple of allopathic doctors who have had such a reaction. They have contacted me to thank me for opening their eyes. Two doctors who work in teaching hospitals actually contacted me to say that my book would become required reading in their curriculum not only as a lesson in learning about LBC, but also about the psychological toll that chronic illness can take on a patient and how empathy must always be an integral part of treating every patient.

A couple of weeks ago it was my great privilege to travel to DC to be interviewed together with my Dr. Jemsek by Boyd Matson for National Geographic Radio. You can listen here. ( http://bit.ly/1mMFyxz  PLEASE SHARE! ) Once you have listened to the interview, if you are so inclined, please go to NatGeo Weekend's Facebook page and comment about the interview and the importance of this subject. The more positive feedback this interview gets, the more attention we will bring to the subject and the more interview will flood in! We need the exposure! 

Next week I will appear on DC's CBS affiliate Channel 9 on an interview about LBC. This is also great exposure which I hope will expand into other regions. I am working very hard during my antibiotic holidays to cram in as much publicity as I can. I hope I am doing you proud.

In any case, this post has been less about my health and so I should let you in on a few details as to what has been happening. My recovery from my hysterectomy while physically not painful at all, caused a great deal of havoc in that I was off treatment for a while and my Babesiosis made it's return. My treatment right now is pretty aggressive, well very aggressive and I have been suffering from complete exhaustion after my 4pm dose even during holidays. I do think that is due to an increase in two of my seizure medications, which was necessary, but makes me very tired. I really do look forward to days of remission when I can have friends over for dinner again, watch TV ANYWHERE but in my bed, and most importantly, put my daughter to bed without the help of my parents. Quite simply, I want my life back. I have had enough.

Sadly, my blue sky and I broke up a few weeks ago but I have to say I have barely shed a tear. It was the right thing at the right time and it needed to be done. When you have made little to no progress in over a year at this age, some changes must be made and such is life. Comforting to me is that I am the most emotionally stable as I have ever been. This means that my treatment is working and that I am nearing remission. I have never been so calm and steady about the loss of a relationship, no matter who ended it, in my life. I am quite simply at peace with it all. I am doing what I am meant to be doing. I am healing as I should. And I know my life is headed in the right direction. It's a wonderful feeling to feel emotionally like a rock for the first time in your life. It's as if I have been given a whole new gift of freedom, not because the relationship ended, of course that is sad and I miss him, but because I am OK with my life and myself as I am in this moment. I have never been able to say that. I believe that is true healing of the brain. My brain is healing. It's an incredible process. And I thank Dr. J for that.

I continue to have a terrible time detoxing and we have been kind of stumped as to why, so I have done some genetic testing and we will be analyzing the raw data over the coming weeks. It will be very interesting to see what gene mutations I may have that are causing my inability to detox, to metabolize, and other basic functions of the body. It's just all very fascinating.

Thank you for bearing with me in my delinquency as a blogger. Life has gotten in the way, but rest assured, it's been because and for you. I am fighting the good fight for YOU. I know you are out there. And I know you are hurting. I see you whether you are visible to me or not. I feel your presence and your need for validation. And I care. So please excuse my absence. Now you know where I have been.

The Unexpected Unexpected - A Session in Babbling

It's horrendous that I have not written in nearly a month, but to be honest, I just haven't had much to say. I've been tired. My brain is just tired to the core. SHARING what's going on is exhausting to the core. The core of my core is...exhausted.

The healing from the hysterectomy, while physically painless, was actually pretty brutal. The combination of the Lyme treatment and expelling the anesthesia from my body (which will take a few months) is just a lot for my body to handle. I have spent much of the past month in my blackened bedroom while my daughter has been in school, going straight back to bed when she has gone to bed. It's been very depressing.

That said, I thought I had made some real strides in that my thinking is MUCH clearer, my hormones more steady, and my mood more... gentle, I think is the word. I think I have been more peaceful. The new epileptic medication we added during the last treatment protocol seems to have helped me immensely. I think beyond the obvious symptoms it has alleviated, my sneezing seizures, it must have somehow balanced my thalamus.

Yesterday I had my first in person appointment with Dr. Jemsek since my hysterectomy. He was sure to have a phone consult soon after my surgery to check in and make a gentle bridge protocol to ease me back into full on Lyme treatment. Again, we went after the Babesia. After this visit, we are again, hopefully for the last time, really going to blast the hell out of Babesia, while going for the Bartonella at the same time. This is going to be a tough going twelve weeks.

I don't really need to get into treatment details other than to say that this was a frustrating appointment for me because I was pretty sure he was going to say "YAY! Hysterectomy! Now we can downsize your pill load"... yeah, not so much. It's just very overwhelming - all of it. If I weren't being treated by him I think I would just collapse in a sea of tears, but I know I am in such good hands that I just take my deep breaths, regroup, and soldier on. Because that is what I do. I do as I am told, when I am told, how I am told. I don't play with dosages and new medications and alternative treatments WHILE in treatment (although I am ALL FOR trying alternative treatments), because I have chosen to follow THIS path and I will not do anything to jeopardize it. If and when I want to make changes, I email him, ask him if I can make the change and receive and answer yes or no with an explanation as to why, which has always pacified my need to maintain some control over my treatment.

Yesterday there was a young man and his family who were checking out and they were holding the office copy of my book. "What did you think of it?" I asked the kid. "Well, I only got through the third or fourth chapter but I definitely want to read it. The mom said, "she has a great sense of humor. We'll buy this when we get home" I then introduced myself and said, "I am the author. If you order from my website I would be happy to sign one for you."

The kid kind of beamed and started asking me all kinds of questions. Did I feel better? How long did it take for me to be on IVs? Would he be able to attend college in the fall? Poor kid. All I could think was, God I hope you are stronger than I am because while I have had some GREAT months, I am in a pit right now. Kind of like The Silence of the Lambs - "It puts the lotion on the skin..." I will get out though.

So, it's for sure now, Mini needs to go to camp so she can enjoy our beautiful summer town and lake. She will have a blast there and the kind of good time that I, once again, cannot provide her on my own. It's just a day camp for 5-12 year olds and she'll have friends there, so I know she will love it. This is a child who NEEDS to be with other kids. She NEEDS to be very active all the time.

So, I am going to sign her up and go for it. Hopefully by my next appointment in July I will get some great news and be able to start to turn a corner. But JULY SOUNDS SO FAR AWAY. I haven't even really gotten into WHY this has all happened, but it's 4a.m. and I am just babbling on. Maybe once I sort things out in my head and get some sleep I will write it all out for you. In the meantime, I have a lot of prescriptions to fill and a cruise to take my daughter on before I begin this next chapter of my journey.

Houston, We Have a Hot Flash

It's been several days since I wrote a REAL post. It doesn't count when I cop out and post Dr Jemsek's video, I know. But I just haven't been feeling well. I some ways I have been feeling great. I was trying to explain to my dad today how I have been d=feeling but it's really difficult because, well, I am just exhausted.

I do think that both Dr J and Dr Clark Were correct in their assessment that the hysterectomy would be my ticket to moving forward. It's now been a month since the surgery. I have been driving a little bit, which is a huge deal and I have been out of the house a few times and while it has FLOORED me when I get home... I HAVE BEEN OUT OF THE HOUSE. Big deal for me, seriously.

But I have also had some very dark moments. I had hoped that the pain in my thighs would have been radiated from the issues with my uterus, but unfortunately, they seem to be a symptom of my Babesia infection. And they still hurt. And so I continue to take pain meds for them. Ad one day they were killing me so i took two, which I almost never do, but I was also detoxing from the anesthesia and became completely delusional. Thankfully, my assistant/friend was here and was watching, sitting with me and Mini was at school so all was well. My parents have been here every night since surgery to go through the Mini routine and I have been in bed until I go and lay with Mini for a few songs and we talk about her day and snuggle and then I leave. There was ONE NIGHT when I was able to do the whole thing - play on my bed and do a craft, make and feed her dinner, and put her to bed. That was such a huge accomplishment for me, but since them I have been unable to do it again. i am J.U.S.T.  S.O.  E.X.H.A.U.S.T.E.D.

That said, my mind is completely clear for the first time in years. I relate this to my hysterectomy and it feels like the weight of the world has been lifted. I can actually think and feel and reason like a real person. Granted, We are still trying to find the right bio identical hormone balance for me so there has been an episode or two when I act out, pretty much only with my blue sky, and thankfully he has been warned and is very patient. I am lucky to have hi in my life.

As I have mentioned, despite the fact that I do not have the MTHFR gene mutation, I still cannot detox as I should. So I have been using, at both doctors recommendations, a detox shake I know is working because when I drink it I get splitting headaches and have to go to bed. I am in bed anyway, so who cares? But it's nice to know there is something I can take.

I have just finished my week of Omnicef and Cipro so hopefully the barf-fest will end today. Next week I just have 3 days of antibiotics and then I get a nice break with a bridge week (light antibiotics beyond the minocycline toward of the buggers while I await my appointment) before I go to see Dr J toward the end of April.

Dr J added another anti-seizure med last visit and it has thankfully ended my sneezing seizures that I had every time I ate ANYTHING. I would sneeze 30-40 times after a meal. It was torture and embarrassing. Thankfully, that is done. So now I am on three seizure meds and remember, at the beginning of all of this, I had no idea I was even having seizures. Crazy Lyme.

April is going to be crazy. I have too much on my calendar and I am stressed. But I will get through it. I just have to schedule naps and create boundaries.

But what you REALLY want to hear about is the title. GUUUUUUUUURL let me tell you, while I am cold during the day, 7 pm comes around after I take my evening compound and holy mother of God - the sweat that comes fro the bone. I don't even want to SEE the comforter on my bed. I kick EVERYTHING off. I lay there and dramatically groan. HOUSTON - WE HAVE A HOT FLASH. Whew. They suck. But, they have lessened as my body adjusts to the new hormones I am taking. After one more month we will do a blood test and see how on or off we are in terms of the dosage. Good times. In the meantime, I spend my days bundled up with the electric blanket on high below the comforter in full pajamas and evenings with the bed ripped to pieces, and me just laying there a tank top sprawled out like Bridget Jones in a tragic position with my hand on my forehead hyperventilating.

Yes, my brain is back. I get to have a little humorous drama - even if by myself. That is progress.

Dr. Jemsek's YouTube ILADS Physician Training Program

Please take 10 minutes of your day to watch Dr. Jemsek's YouTube 

ILADS Physician Training Program

You will understand why I love this man for saving my life and his approach to how he's done it!

A great watch. A wonderful doctor. 

Please comment below. 

I hope everyone learns a little bit. 

When YOUR Idol Says YOU Inspire HER - It's a Life Moment

I woke up again at the trusty hour of 4:13a.m. and as usual, tried to get back to sleep to no avail. And so I started to go through my various social media outlets. When I finally got to my Twist email account, I stared at it endlessly. 

If you have followed my blogs for a while you will know that I absolutely love this artist and it was her song "Unfold" that gave birth to Twist. I have told this story so many times, but after my first appointment with Dr. Jemsek, I sat on my hotel room bed with so much to think about that I really didn't know what to make of it all. It was as if the world had stopped around me. 

But my iPod played on shuffle at after a couple of hours, one of my favorite songs, Unfold, came on and even though I had always known the lyrics, I felt a heart tug that was undeniable. The lyrics were speaking to me. ABOUT me. And that is when  knew I needed to write Twist. 

Listen to Unfold

And so at 4:13a.m. I stared at my inbox. 

There is was. The incredible. I couldn't believe it. 

An email from Marié Digby:

March 21, 2014

"Hello Andrea!

It was very moving for me to hear your story and how brave you have been through it all! It takes a lot of courage to openly speak about something which so many people don't quite understand and sometimes still see as controversial. 

Your story encourages me to also keep singing about things which scare me! That's exactly how I felt when I wrote 'Unfold'. I thought to myself.. 'I'm never going to let anyone hear this. This is just for me'. But the day I chose to perform that song for another person is when it took on a completely new life. I'm sure you felt something similar after having finished your book!

Anyway, I just wanted to say hello and tell you that I am routing for you  I hope we have a chance to meet in Boston someday! Lots of love to you xoxo

Marié Digby"

I am in awe of this gracious, beautiful, hard-working artist. Please listen to "Unfold", hear the lyrics, and know that she is speaking my truth and that song helped me break through a lot of barriers. 

This is yet another sign that I am on my correct life's journey path. This email has given me the strength I will need for the upcoming media wave in April when TV starts, when I have a conference, and when we go on a Disney Cruise! That cruise better involve some quiet and sun and not Donald Duck shaking his booty and blocking my sun. 

What a way to wake up. I feel terrible and yet, this will get me through the morning Mini routine and then I can crash and keep looking at that email to brighten my day and receive the energy from it. 

Marie, if you read this blog, thank you. With all of my heart. 

Andrea 

Humpty Dumpty Sat on a Lyme

Well the robot did its job and took out my lady parts and I have not yet experienced a hot flash or any sign of menopause besides the one day when I went into a stupid jealous fit over, um, nothing, with my Blue Sky. I never get jealous with him. I blame the change in hormones.

I am PISSED that I gained what is now 6 lbs from this surgery. I'm sorry, did you take a ton of stuff OUT or put it in? Grrrr Not happy. It may not sound like a lot to you, but I was lookin' smokin' hot in Punta Cana in January if I don't say myself and that does wonders for a girl's Lyme morale.

And part of the reason I am not happy is a good reason! Television inquiries for news clips, interviews and feature stories have begun to come in and I am excited about that. So if this new bio identical hormone compound would work with me a little maybe I won't look like Humpty Dumpty sat on a Lyme. 

I am back in treatment - the big one for Babesia again. Today will be day 4 of 5 - the days I add the antibiotics Flagyl and Diflucan twice a day. Maybe that will get me back into my skinny jeans. UGH. Today I have a print interview at 11:00a.m. and then a LIVE radio show with callers and everything out of Sonoma this evening! AHHHHH!

Now that I just wrote that, I realized today is Thursday, but my drug box is on Wednesday - I am a day behind on  my meds. WHAT AN IDIOT. Oh well, short holiday I guess. YAY for Sunday!

The good news is that I am not (yet) barfing up the few of the major organs I have left, but I am still quite symptomatic. I have a lot of joint pain around, unusually so in my knuckles, wrists and elbows. I have list control of my knees a couple of times and have fallen down the stairs, but this is common practice for me during a Babesia treatment. That's just how we roll (pun intended).

Just got the call that there is another FREAKIN' TWO HOUR SNOW DELAY. I want to be the mommy that thinks this is fun and magical, but I have a few more years to be that mommy before she is a teenager who hates me. Right now the thought of snow play, well, it just doesn't exist. 

I honestly spend most of my time planning our magical trip on the Disney Cruise. Lord knows how I will make it, but I have a driver taking us to and from the airport and then we will stay at the airport in Orlando for one night so I don't have to stress. Then we will go downstairs one floor to the Magical whatever bus, and let me tell you, once this process begins - WE WILL BE DONNING OUR GAY APPAREL. 

You heard me, this mom is sparing no expense to be the coolest mom of a 5 year old on a ship. She doesn't know it yet, but I am going to dress up WITH her like Minnie Mouse on the day we board the ship - HUGE BOW IN THE HAIR AND ALL. I'm going for it. And since my birthday is on the ship and it happens to be on semi-formal night, this Lyme-o-rific mama will be in a LBD with a silver glittery (and I HATE glitter) mouse ears with a silver tiara between the years. All of this after wearing a t-shirt that day that says around a life preserver:  Birthday Girl (on top)  Mickey holding a 39 (in the middle) and MOMMY (underneath).  

This trip means everything to me. It's something she will always remember that WE did together. We always do everything with my parents right now. We need Mommy and me time. My friend Gayle is coming along and occupying the top bunk. I'd take it, but holy mother of God if I had to get down that ladder in the middle of the night on all my meds. BAHAHAHA - That'd be the end of me.  So Gayle will be fun to have along, but this is really about Mini and how amazing she always is. 

So I scrutinize the website and our passports and our cruise documentation daily. Then I got my hands on some Navigator Programs - Schedules for Each Day. Whoa. There is so much to do! I think we will need another week! But I have to remember that this is about RELAXING TOO and the reason I chose DCL is that they have a fabulous kids' club where they never want to leave so I may actually be able to get some rest. 

But before then, I have so much going on - not sure how I will do it all. Endless interviews (thank you, Lord, keep 'em comin'), a 5 day conference (bonus - Blue Sky is staying with me!!!!), trip back to see Dr. Jemsek - return on a Wednesday from that only to leave at 7a.m. on Friday to get to the airport to go to the cruise. Holy man. And when I come back I will be 39. That's almost halfway to 80.

So, I am going to have ix-nay the caloray intake for the next couple of weeks so I'll be more like Snow Lyme than Humpty Dumpty Sat on a Lyme. 

How Do You Pull It Off?

Many people have been asking me how I pull it off financially. SO, briefly, for the other Lymies our there, i am going to tell you about what I do and invite you or anyone you know in the U.S. to join me. This is how I do it. This is what pays the bills. 

I work for a company called Ava Anderson Non Toxic. We develop and produce cutting-edge, SAFE personal and home care products to the highest performance standards. We are leaders in providing wellness information, while sharing the dangers of toxic chemicals in personal chemicals in personal care products with families across America.

You can make a difference while making money. We offer a business opportunity that you can be proud of! Earn a terrific income, while doing meaningful and valuable work. 

We provide excellent training, a free website for your customers to order and another to use as your "back office resource center" and a timely business opportunity that offer unlimited part or full-time income leadership opportunities, incentive travel trips  and more. 

NOW HIRING: FUN, PASSIONATE, ENERGETIC, GO-GETTERS who want to build a strong home-based business GREAT FOR PEOPLE WITH LYME WHO NEED TO WORK FROM HOME!!!

JOB DESCRIPTION: Work at your own steady pace that you stick to. Teach people the iimportance of know what's ON your personal care and home bottle labels and what's IN them, then offer Ava's healthy and affordable alternative. Consistently follow through with your customers, book new parties and maintain relationships with your customers and upline leaders.

The Payoff: earn 30-50% commission. An average Ava party is over $650, but let's say you have four $500 parties in a month. That would mean $2000+ in sales and $800+ in commission! You also have several opportunities to earn free products through our weekly challenges, Quick Start Program, and self-hosted parties.

if you are interested or join me if you are serious about selling $1000 in product in 30 days you will get $50 free in products form the company and $100 free from me (an Andrea Caesar #2210 exclusive!!) www.AvaAndersonNH.comor NontoxicNH@gmail.com I work with teams in 50 states so don't worry if you live away from me