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

ORGANS - DISMISSED

I know many of you have been waiting for an update on my surgery and the truth is, I have just not been up to it. The good news is, I feel OK, I am just pretty tired, but so many people are asking now, that it's time for an update.

Dad picked me up early in the morning and Julie had slept over that night to help Anelya get to school that morning. I checked in right at 7:15a.m. and was almost immediately taken into a room to start the process. I allowed Dad to come with me. Lyme has kicked in and I am trying to remember how it went down.

First the had me say my full name, date of birth, and what procedure I was going to have (which they did every time they saw me. Like EVERY TIME.) Then they asked me to get naked and put on two johnnies, the first facing forward, the second facing backward with only one arm so as to cover my tush while walking around. I was given the IV and the army of nurses, anesthesiologists and my two surgeons.

Thankfully, my chart confirmed what I had told them, that my surgeries tend to be very difficult because of my Lyme-induced connective tissue disorder, which in the past has strangled my gall bladder and left ovary, and adhered a coconut-sized endometrioma to 2/3 of my pelvis. I am a pain in the ass.

I was very pleased to meet Dr. Schorge, the Head of Gynecology Oncology at Mass General who had come up to assist with the Galileo robot surgery if there were complications. Then came in my wonderful GYN Dr. Bleyenberg, a funny but very capable woman who respected my wishes for a full hysterectomy from the beginning even though it is customary at my age to leave an ovary. She came in in her scrubs, with a hat covered in uterus with arms and feet and happy faces, which was quite comical. We went through the usual hullabaloo and then she left and they came in with the happy meds which were very disappointingly in the form of a needle. I like the happy gas mask. But I was in good spirits.

I was wheeled into the OR, they showed me the robot, which I don't remember, and sooner than I could blink I was out like a light. When I awoke, I think my mom and dad were there. I was in and out and then my dad, who was in clear vision, told me my sister was there too. I turned my head and there she was. "Hey," I said. Mom had brought flowers and we were in a waiting room, it was 2pm. The surgery had taken a few hours longer than anticipated.

It turned out that my uterus had collapsed from the strangling of the connection tissue adhesions which stuck to my lumbar spine, explaining a lot of my pain. It was also explained to me that my intestines had shifted left and were also heavily adhered to my left hip. So, now I know why it hurt so much to stretch to the right and straight down. It also explains why intercourse had become painful. I know it's very private, but I promised to always be honest. I have to be if you will get the whole picture. Basically, everything was where it was not supposed to be. I was relieved to hear that the surgeons felt that this hysterectomy was "absolutely necessary". To have heard anything else would have been upsetting.

So we sat for a while with Mickey, my OR nurse, who I later found out was a Head Medic in Vietnam and had been an ER nurse for decades and kept trying to retire but just couldn't seem to do it. He loves his work and it showed. He sat in front of me and my family to my side. Every nurse that came in got a card with a coupon for a free eBook. It's my mission to educate the medical community on Lyme and so the surgeons and all of my nurses got the book. I hope to hear from them.

It was 2pm and we heard I may not get a room until 5, which was very frustrating.  But Mickey was there talking with us. And we went through my whole life experience with Lyme and he was truly fascinated and full of questions. After a while, he excused himself and I heard him make a call, "This is an extraordinary woman who is an absolute authority on Lyme disease. She has been through so much. We need to get her a private room and some peace and quiet. She is trying so hard to advocate in the medical community," and he went on about all I had been through in my past.

Before I knew it, only 15 minutes had pasts since I was told it would be three hours before I would get a shared room at 5pm, when I found myself in my own room before 3pm. It was amazing and I am very grateful to Mickey for whatever strings he pulled.

Now, one thing i have learned through all of my experiences in hospital settings is you catch more bees with honey than with vinegar. I am always nice to people, but with nurses, I make a point to get to know them as soon as possible and am very patient and as easy-going as can be. I always ask where they are in their shift because a) it helps me know how tired they are = cranky and leave them alone as much as possible and b) how much energy I need to spend becoming their favorite patient.

Now, I have explained in my past book and in this current piece that you always need to know your own body and be your own health advocate. I have found this to be especially true when it come to catheters. Often times, nurses think catheters are working smoothly because they see urine in the bag, but if you feel your bladder is full, you must be very adamant about it until that is remedied. This has happened at every surgery I have had. I felt very much that my bladder was full. The nurse check the catheter and said it was fine and I said, "no, it's not because I really have to pee so if we don't figure this out we will have to take it out so I can go to the bathroom." Sure enough, when she moved the bag around, another 400ml came out and I was relieved. Again, TMI, but you MUST trust your instincts and be pleasantly insistent at all times.

I was in and out of my sleepy state the whole time and was delighted when my sister showed up again with my two nephews and brought me some dinner and a boatload of snacks, including an obscene amount of chocolate. Hormone changes + chocolate = great combination. They stayed as long as they could until the boys had to runoff to play hockey. It was really nice of my sister to come twice in one day. I have to say that I did really well at the hospital and my pain was at an absolute minimum. I think that I had been in so much pain for so long, that this was actually a relief for me, when most women would find it excruciating.

The following day, my parents left for a much-deserved vacation (away from taking care of Mini and me) in Charleston, SC with my mom's childhood best friend and her husband. So, it was time for Andrea's army to go into action. I was picked up late morning by my sweet friend Carissa who brought me home. I was loopy, but interestingly, my pain never exceeded a 3 on a scale of 10 so I only took one Percoset that day and since then an occasional ibuprofen, but that is IT. I am kind of shocked by that. We drove back home with a pillow between the seat belt and me.

I made it home and my cleaning lady and friend, Jill, had arrived to take care of me for the next 24 hours. Mini had a sleepover play date and was VERY excited. This was perfect because I had complete peace and slept for 36 hours almost non-stop except to eat a little and go to the bathroom. At one point, I weighed myself because I looked 6 months pregnant and my belly was REALLY hard and I had gained 16 pounds. WHAT??????  Well, obviously it was all water weight, but that was shocking to see. They blow gas into you so they look around and get into places they need to get into, hence the bloat.

I'm still a little bloated 6 days after surgery but pain-free and still very much compliant with my doctor's orders. I was told I would go into menopause on Saturday, the day after the surgery, which has not happened. I have not noticed any change in body temperature. Tomorrow I will begin my bio-identical hormones and we will start the process of finding the right balance for me. It may take a while and my Blue Sky has been warned and is ready for the mood swings, but I am certain we will be successful in working it all out quickly.

On Monday I am going to start treating my Lyme again with a "bridge week", a light week of antibiotics to ward of any regrowth of the spirochetes and then I go back into full blown Babesia/Lyme protocol the following Monday. I have a hysterectomy follow up on March 17, which is good, because I am unclear as to what I am supposed to now - what activities I can do - not that I have the energy to do anything, but still. I hope to start driving Mini to school or something soon. We'll see.

Once Jill left, a parade of people came in to start the care ward - Julie (the week's master of Ceremonies), Pierre, who stayed from Mon-Thurs just to watch me, and Katie who was nice enough to drive Mini to dance class and bring her home on two occasions. Next shift is Julie spending one more night before my friend Beth comes up from Rhode Island. Mini has play dates for both days this weekend so Beth and I can chill and my parents can continue to settle back in before their refuge comes to an end and real life sets back in.

I have to say, I truly hope and believe this hysterectomy will be the key to that gateway to remission that has forever been locked. May this be the key.