A Mile in My Shoes

You hear it all the time from people who feel misunderstood: "Walk a Mile in My Shoes." I admit, I have said that to some pretty important people in my journey and thankfully, I have held their ear despite the fact that this phrase for a chronic Lyme patient, at least this one, is completely absurd. Why, you might ask? It's a completely valid sentiment. But ON THE REAL... Um... I haven't walked a mile in my own shoes for a couple of years now, so who am I to say that?

Well, seeing as I am determined to be "remission-ish", I just took myself for a walk. It wasn't a mile in my own shoes, but it was about, well, let's say just over a 1/2 mile. And it sucked. I was careful to actually pay attention to what it feels like to "walk a mile in my shoes". Well, for starters, ouch. My feet are hot and swollen like I am 9 months pregnant, but that's a given on any day. What was really interesting was the sensation that EVERYTHING was being weighed down - my hands pulled to the ground, my shoulders pushed down HARD toward the ground, my HEAD pushed down. I felt the pressure in every singe vertebrae. It was to bright outside so I saw black spots. You know the drill. UGH.

I live in a neighborhood where the houses are build in a circle that create a complete mile. I wondered when I left if I would make it. Not so much. But I tried. I actually got out there. Alone. No one nagging me but myself.

So next time I tell you to walk just over a 1/2 mile in my shoes just know that I just did it and it sucks. You might not want to go there.

Maybe I'll get to 3/4 of a mile sometime this week. Or maybe just 1/2-ish again. At this point, any movement is forward movement. And so, besides that and me wanting to sleep all day, everything is GRAND. LOL.

Dr. Jemsek's Quarterly Newsletter was just published and features a very brief synopsis of my story. Follow the link and show him some love.

"Remission-ish"

I returned just now from a 2.5 hour drive home from Providence, where I spent three days at an Executive conference for my company. As many of you know, I am lucky enough to work from home, but a few times a year I travel to conferences, meetings, and once a year on an international incentive trip.

These conferences are jam-packed, intense, and full of information There is very little time off and in the past three years, I have always had to leave mid-presentation to sleep for several hours or to get some quiet due to some kind of horrendous health issue. As a high profile consultant, I have HATED that, because people notice when I am gone and I've always felt pressure (from myself) to "be there" no matter what. But I couldn't. For years. I will say, though, I ALWAYS showed up. 

I once went to conference in Palm Beach 6 days after a c-section to remove a coconut sized endometrioma, against my doctor's orders (until I insisted he give me the ok). I went to an Executive Summit on IVs. I went to Mexico in a wheelchair and relaxed with the owners of the company under a palapa by the pool with my IV bag hanging from a palm tree - no joke. I show up. 

These past couple of years on oral antibiotic treatment have been VERY rough on me. It took almost a year to kick the Babesia enough to move onto Bartonella protocol and once we did that, the switch whacked me on my noggin' but now that I am a couple of rounds in to that, I seem to be evening out a little. Last week, prior to conference, was the first week in over a year and a half that I have spent more than 4 hours downstairs in a row at all, much less three days in the same week. That was a big deal. Now, while I had been downstairs quite a bit last week, I still felt like DEATH and was forcing it on myself. I fully expected that this past weekend would be the end of me.

It's amazing how previous health experiences can put patients into full on PTSD mode - expecting the worst. Guilty as charged. It's good to be realistic, to be honest and prepared, but I am reminded that I am as responsible for setting myself up for success in my day, as I am in my business. Thankfully, even though I uncharacteristically went into this conference with the assumption that things would go badly, I allowed the positive to take over and when I felt like I was just too exhausted to sit another minute, I went outside the room and rather than going to my room for a long nap, like I have done in the past, I took a 5 minute standing breather and went back in. And I made it. 

And I had FUN!

Now, I know that this process will be one of baby steps, but babies become toddlers and.. TODDLERS ARE FAST!!!!  None of this means that  I am in the clear, but Dr. J DID say I was weeks away from the beginning stages of remission and I have to say, this feels... "REMISSION-ISH"

Memory Pie

I have been making extra strides to push myself further than I may feel ready; trying to stretch my energy muscles, my mind in to a state of uphill movement, building stamina, perhaps by seconds, but by seconds no less.

Sometimes I succeed, sometimes I don't. This morning, Mini let me sleep an extra 15 minutes and for some reason that made all of the difference in the world and so once I gt myself up I surprised her by telling her we were going to bake an apple pie. Like RIGHT NOW. Because I knew RIGHT NOW was what I could guarantee.

In the past and in my current mind, I am the kind that makes everything from scratch, makes those perfect little cut out leaves to place on top of the pie crust etc, but today it was basic, we're baking a pie. Here's a memory in a pie for you, Mini. A pie.

I peeled and sliced that apples as quickly as I could and pre-measured all of the ingredients and got a big mixing bowl. Mini jumped into the baking pod, a standing box where she can safely get a boost and cook with me on the kitchen island without fear of falling, and then started mixing the dry ingredients, dumped it into the apples and them refused to get her hands yucky to fold the apples into the mix, so I did it and then dumped them into the unapologetically pre-made frozen pie crusts.

The whole thing took my maximum of 20 minutes standing without discomfort. I have been complete putty ever since, but I am proud of myself of getting that Mommy and Mini project done today.

After all:
You are only as happy as your saddest child.

Expectations

It's been radio silence from this end for quite some time now. And I could get into myriad of things that I have been up to such as the 100+ interviews I have been blessed with to spread the word about Lyme, the collaboration I have been working on with a team of consultants for Dr. Jemsek's ILADS presentations in October, and just plain living my life. There is truth that lies in all of that.

The latter is an important one because weight lies in the time when one can take a step back from a serious prolonged illness and actually begin to identify himself as something other than a sick person or even the illness itself. I have to say, however, that I don't think that I have succeeded at that, much as I may have tried.

I have drastically improved, but I am not completely in remission. Dr. J says it will be a matter of weeks, not months. Right now my biggest hurdle has been my inability to detoxify. At the moment I have dangerously high levels of ammonia and we are trying a new route in lowering those levels and removing the harmful chemical from my body. And I feel like shit.

I cry a lot. I am in bed all of the time. I hurt a lot, especially in my upper spine, which has been unbearably tight, but I feel as if I will go through the roof if someone touches me there so massage is out. As directed, I took Marinol pretty regularly for about a week and finally my muscles released. When they tighten up again, I try to nip it right in the bud. It's been a rough go.

But I think the real reason I haven't written is that I feel almost like I am failing you as readers, followers, and even those of you who refer to yourselves as fans. It saddens me that I am not living up to your expectations, or at least the ones that I have created in my mind that you may have of me.

It's been a year since I submitted my manuscript for editing and I sat in my sauna today trying to detox the ammonia, while reading Twist. When I read the chapter Happy,  I found myself wailing in a puddle of tears, realizing that it has, again, been a very long time since I felt truly happy. I am not sure I would know happy if it hit me in the face. Sometimes I feel content, like I have some direction, like I know which direction to go to find my happiness. I have come to the realization that to find that happiness will involve a move for Mini and me. It's a big step, but if you read my book, you will remember that I moved here unwillingly in a trauma because I was sick and I remain here because I am sick. And I believe that this final component, the one that will drag me out of this hell, will be to start a new life, much like Dr J wrote about in the Foreward of Twist.

I have had some wonderful things happen. While in DC a couple of weeks ago in meetings preparing for ILADS, I was interrupted three different times to meet fans of the book. This was such a high for me, because as soon as I entered the room there were tears, hugs and thank yous that I never expected. With their permission, I am posting these pictures that honestly made my, well, more than my day - it made all of this work worth it to know first hand how deeply I touched these patients. What they don't know is that night I slept from 5pm until 8am the next morning and upon grabbing my coffee at Starbucks on my way to work some more on the presentations the barista said, "You look sad." And I recalled my chapter called Invisible Illness. I had my normal face on. I was just tired. All signs have led to a reread of the book.

Meetings these ladies and spending some time with them truly warmed my heart. I am so glad to have given them hope and something/one to relate to while going through, what I know is, hell. I just don't want to let them down. But as patients and advocates, we must stand in our truth and right now, I am frustrated. I want more. I want to be done. I know I am close. But it's not close enough for me. I want all of us to be done. And I want justice. 

When I get like this it's always a combination of illness, sadness, and anger. At the same time, I look back and realize how far I have come and i am eternally grateful for that and everything Dr. J has done for me because he has truly saved my life and its quality. But I am sick of my bedroom. I am sick of not driving. I am sick to death of this Disease and watching people suffer. 

As usual, I am my real self. I am struggling to stay awake, my eyes heavy and hot. I have a conference coming up and I hold a pretty hefty place in the company. I am terrified of having to leave at some point to pass out, like I have done during previous conferences. It's embarrassing and frustrating for a hard-working, A-Type personality like me. But I have learned to take myself as I am and just hope that those around me will do the same. 

And so I apologize that I haven't written. I have been waiting for the HURRAY! post, but I just don't have it for you yet. I hope I haven't let you down. According to Dr. J I am just weeks away from feeling better than ever. And I can't wait. Maybe thats why i am so impatient. But for now, I write to you at 2p.m. from my bed, having thrown up uncontrollably after a long sauna which probably helped in getting me ammonia detox going. 

What a long, tough road this is. And there you have it. Expectations are tough. 

A Twist of Lyme: Battling a Disease that "Doesn't Exist": Throwback - Blue Skies

A Twist of Lyme: Battling a Disease that "Doesn't Exist": Throwback - Blue Skies: Things are so much better now, and almost a year has past since I wrote this, but it means so much to me still, if perhaps in a very differe...

Throwback - Blue Skies

Things are so much better now, and almost a year has past since I wrote this, but it means so much to me still, if perhaps in a very different way, that I wanted to share it again. I am still waiting for my true blue sky - my full remission, but this poem I wrote in September of last year reminds me that I can find many different kinds of blue skies along the way. So for all of you out there who are awaiting your blue skies, remember that after blue skies come overcast, or dark clouds, sometimes storms, then blue skies again, and such is our treatment. And so is treatment...

Blue Skies

He promised me that there would be blue skies 
That if I listened and did as he said, that they would come to me

Better days, happier times, I supposed
I spent months looking up at the sky, never to see any blue
I would stare for hours and hours
Watching the birds fly, first north for the summer
Then south for the winter

Only to return again

I examined each cloud to see if my blue sky might be hiding behind it
Never to be seen, never to be found
I counted the stars, again and again, losing count and starting over
Maybe he meant my blue sky would be found on a dark one on a clear night
I watched each moon as it progressed from a crescent to a full moon
I stared at the sun, wondering if its glare might lead the way
Every raindrop could hold the key to my blue skies, once that final drop hit the ground
I searched and pleaded with whoever was listening in my silent room to find my blue skies.

But no one ever responded

My blue skies, never to be found, I thought
The sky - blue in the air, but never in my heart
I questioned him, quite angrily at his failed promise
That my blue skies he had taunted me with for me months were nowhere to be seen
I felt deceived by the one man who was saving my life
He begged of me to be patient, to stay on course
And so I looked at the North Star and pondered what a blue sky could really be
I waited patiently and stopped searching
And by doing so, I found those skies

Or better yet, they found me

And I caught the blue skies, with my eyes, my arms, my lips
Vowing never to let them go
My heart sang for the first time in many years
And I felt alive under those clear blue skies
And I vowed to never forget the special feeling of something so longed for

Finally found.

My blue skies didn’t fix everything
Nor would I be able to stare up at them for long
But I have never forgotten the feeling, as I vowed
And I find myself again each day looking out the window
Staring at the sky, hoping they will return
Vowing to never forget that feeling

My blue skies.

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

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.  
  

It's Gonna Be A HEATWAVE!!!

So, there's been a lot of blogging and talking and crying and thinking in the fetal position about my hysterectomy which is in  *GASP* four days and that means I know something you might not have realized. On Saturday I will officially be in menopause. Well then, holy crap.

I have a great doc who has been treating me for ten years (and mostly because of my train wreck hormones) who is comfortable and very experienced in working with compounded bioidentical hormones, so that's a plus, but menopause it just sounds so OLD. I have been promised near instant hot flashes and mood swings (blue sky beware), and that it might take a few months for us to get just the right dose of all of the hormones. So that means more blood testing and more symptom journaling and now wondering, "Which came first, the chicken or the egg" but wait, I won't have any eggs, so it must have been the chicken. Anyway...

I've even broken down and read 8 pages about hysterectomy of this wack-a-doo's book: 

REALLY???

I bought this in one of my middle of the night sleep-meds-induced shopping extravaganzas. 

It's so fun to see what arrives at the door sometimes...

Maybe she does have something good to say, but somehow I just can't swallow it. I'll try again tonight. Maybe. 

I haven't really thought much about the surgery since my naturopath told me to be at peace with it all. That helped me a lot and I had a great phone appointment with Dr. J where we talked through my fears, he talked me off a ledge, again, and we discussed how my Lyme treatment will unfold post-op. I am pleased with the plan, as it seems there is mapped out way we can ward off the spirochetes from repopulating while not going full blown back in treatment while my body is still a bit vulnerable. After a reasonable break, I will do a "bridge week" and then the following week go back on my last treatment, which I did quite well on, but that went pretty hard after the Babesia. We'll see how I do with this post op. PLEASE let this one not make me heave. Pretty sure that would hurt after all of the upcoming disruption that's about to happen in my abdominal area. 

Sigh. I guess I am thinking about this now. And I am kind of stressed. You know, in a peaceful sort of way. I think. 

As is I didn't feel old enough because of my date with menopause on Saturday, I am now Instagraming, God help me. It's like rocket science. Do me a favor. Just find me and like me or heart me or # me or whatever it is and help me find my way. I feel SO out of my way. I am SUCH a Facebook expert and yet, so out of it when it comes to Instagram. So just find me - TWISTOFLYMEBOOK

And I'm TWEETING and Pinteresting now too. What is WRONG with me? Well, I love social media but I am also in bed A LOT and it's something to do since I have binge-watched every show I wanted to watch and hate every other suggestion I have gotten. I even dedicated a category to Binge-Watching for Lymies on my Pinterest page. You can find me everywhere at the same name - TwistofLymeBook basically because if I come up with another name I will forget it - because I have Lyme. Sigh. 

Tomorrow morning at 7:25a.m. I will be on WICN 90.5 FM a jazz and NPR station out of Worcester, MA. NPR during the beginning of rush hour! YESSSSSS!!!! So, if you are in the area, tune in! If you aren't click on the link prior to the interview in case you need to download something to listen live. I will also request a file to add to my podcast station, which we are working on and will soon be available on iTunes so you can subscribe and listen to all of my interviews - pre and post-menopause!

In any case, I am going to go enjoy tonight, one of these last evenings of my youth, by going through my taxes with my financial guy, to make sure we haven't missed anything before I submit! Yeah, my taxes are done, you heard me right. Now to just save up for that first estimated tax increase. It was a good year last year since I am lucky enough to work from home = computer in bed, and I am sure this year will be better. That's just the reality I have to create. Things will just get better and better from here. 2014 just HAS to be my year. And I hope it's YOURS too!

First radio interview

Here is my first crack at a radio interview. If you haven't done one of these about your own own piece of work, it's a little nerve-wracking but I hope I held my own in this one!

You can listen to the podcast here

Thank you for listening!

Love & Health, Andrea

Roller Coasters and Gratitude

Well, if you have been reading my posts lately, you will notice they have been VERY up and down. And I am glad you have witnessed that because that is exactly what it is like to suffer from Lyme Disease. Some days are OK, some days are hell. Some hours are good, some hours, not so much. As a patient you learn to live with Lyme not to let Lyme live you, which actually still does happen from time to time.

It's been a very stressful month with the subject of the hysterectomy having come to the forefront and I have found myself dealing with a lot of pent of fears, frustrations, and questions - on top of all of the excruciating bodily pain, exhaustion and mental fatigue I experience on a daily basis. My normal roller coaster has kind of been like running up Mt Everest and then jumping off Niagara Falls all in an hour, every hour, for about a month.

It's also been very exciting. My PR campaign for the book has started now and I am really thrilled that people are taking notice, booking interviews left and right and more importantly than than them being interested in my story, they are interested in LYME, which is what needs to get out there. We need to really have a rational, fair, uncorrupted discussion about what we are going to do about this pandemic and honestly, I think it has to start with someone like me - just a mom from NH - a neutral - to make this happen.

My interviews have gone beautifully so far and I am enjoying them. I feel I am living up to my calling which is to spread awareness not only about Lyme, but to give the disease a voice, to humanize it in a way that we are talking less about spirochetes and biofilms, and more about the lives that are being lost, destroyed, and mangled at the helm of this incredibly gigantic ship with no captain.

The questions are hard, because Lyme is so misunderstood - What are the symptoms of Lyme? Well, pretty much everything - there are 600. I assure you though, I have a fine-tuned answer to that one. Why is it so hard to diagnose? Well, the people who make up the IDSA all had conflicts of interests or colleagues who did, so it wasn't an impartial study that was done...all those years ago... at all. I basically refer people to Under Our Skin, the documentary, for that. Mostly though, what I have found is that once I start speaking MY truth, what it has been like to watch Lyme weave its way through my life in its various stages from my tween years until now when I am almost 40 and a single-mom of a five-year old, it's almost as if the hosts are left speechless, not sure what to say, because Lyme is so overwhelming, so incredibly audacious by all standards that it almost seems to horrible to be true.

But it IS true. And this is also true. There are some really wonderful people in this world and a lot of them are in my life. I have worked hard in my life to be honest, good, helpful, and loving to all people. It has always been hard for me to ask for help, but Lyme has been humbling and I have learned that not only is it OK to ask for help, but it is a part of being a complete human to do so. For when we ask for help, we are allowing others in.

While I recover from surgery, my parents' house will be occupied by house sitters which means... you guessed it - my usual caregivers will not be here to take care of Mini or me. And while it has left me completely panic stricken at times throughout the past two weeks, I managed to map out everything that would need to be done from pick ups and drop offs, to meals, to caring for me, to caring for Mini, to play dates, to just watching Homeland with me and you know what? Every single slot on that list was full within about 24 hours. I have some amazing friends. I will add that two people are coming up from over 3 hours away to stay with me for half the week - one for the first half the other for the second weekend. Now if those aren't good friends then I don't know what one is.

This has also meant that I need to put the pedal to the metal on Mini's LONG overdue birthday party. Her birthday was in the middle of January, but I was in the Dominican Republic (mother of the year) with my job, and then went straight back into treatment. SOOOOO this weekend we are having a puppy party. I won't spoil all the details for all of those 5 year old readers out there, but the cuteness is almost too much and it has been fun preparing for it this coming weekend. Someone is pretty excited. I am not sure if the one who is MORE excited is the one who is 5 or the one who is 38.  I just hope it will be a good Lyme - but I am creating the reality that it will be.

So today, while I have had some pain issues, I just want to stop, take a breath, and say THANK YOU to everyone who has signed up to help out after my surgery. I am also so grateful to the hundreds of you who have sent me your kind words about my book. It absolutely gives me goosebumps to read that you felt as if you were reading your own story, that finally someone understood you. I am glad you have a resource to share with your loved ones now so they can see from another angle what it's like to be "one of us".

I am grateful for so many things, but most of all, I am grateful today to my Lyme Literate Naturopath, Dr. Steve Clark who said something to me in an appointment last week that allowed me to unleash myself from the chains of stress I was holding onto so tightly. After lots of talk about bio-identical hormones and how we will go about treatment after my hysterectomy, he ended the conversation with a sentence which freed me, "Andrea, I think the best medical advice I can give to you right now at this very moment is for you to be at peace with the surgery and subsequent treatment."

And with that, having sought out four opinions- 2 female, 2 male; 2 GYNS, 2 Lyme Specialists one of which is an ND, I realized that I am doing the right thing and I am ready, willing, and able, to allow this surgery to help me heal and move onto the next stage toward long-term remission.

Pre Op - Dejá Vù - but no já vù

I probably got my slanty things wrong. Sorry france. Apparently from the red underline the word slanty isn't a word either. Sorry America. I have more important things to talk about. You see, I am about to kick several organs to the curb.

Today I went to the sixth pre op appointment in my life, all caused because of Lyme. I hope this will be the last, but that is unlikely. Anyway, I went to have my pre op for my full hysterectomy. I am in a better place now than where I was during my "Breakdown" entry a couple of days ago.  That said, I have not slept more than 4 hours a night in 5 nights and I am exhausted.

Dad showed up this morning to take me to the pre op appointment. I had originally wanted to drive myself, since I am doing some driving now at certain points of the day, but with the snow and all, it was good that we decided he drive. We talked the whole way down which was strange because we weren't interrupted every 30 seconds by a certain small person in the back and I think we actually had some conversations, but I don't know what we talked about.

And that was the theme for today - Lyme Brain. I have no idea what I said r what was said to me at any point of the day today. I don't know who has called me or who has not.  I don't know how Mini's day was even though she told me. I think something happened that was exciting, but I don't know what. I do remember that she ran straight past me to hug her grandpa. Little rat.

Anyway, my surgery is all set for February 28 with the Galileo robot and my surgeons Dr. Blyenberg from Garrison Women's Health, an Osteopath that I just dig, and Dr. John Schorge, Head of Gynecology Oncology at Mass General, coming in for my full hysterectomy. There is no fear of cancer, but he is an expert at very difficult surgeries and I am very good at offering very difficult surgeries, so it seems we will be a good match.

I was invited in and told the doctor that we could go through the girly stuff together before bringing my dad in because he doesn't need to be all up in my girly grill. I forgot that I blog it all anyway. LOL. So here's what she said. It fees so much better said it anonymously (not so much) behind a screen. No sex for 8 weeks and no submersion in a tub for 8 weeks. I can shower normally and s long as I can pee, et and drink normally, I should be out of there the next day. That will be good for Mini.

So then I let Dad in. Of course I remember that I was a back seat driver with Dr. Blyenberg and was like make sure you look here because this hurts like a bitch and my pelvis holy crap and.... she said we will look from HERE to HERE showing me the middle of my ribcage down to my pelvic area. She also suspected that this horrendous thigh pain i have had for 25 years has been radiated uterine pain. Super. But hey I remember that part. And I remember her saying the word PRINCESS. That for two weeks I am to be a PRINCESS and not pick up anything. I can handle that *grin*. But I have to walk around. I remember that. But not too much. I don't know know much much. I am confused.

Then she talked and talked and I signed something and that was that. Dad seemed to have taken pages of notes. He is well trained from DC. On the way home I told him how confused I was and he said, "well I took notes." So I guess we'll just trust the robot. The one stupid thing is I have to go ALL THE WAY back down there just to have my pre op blood work done. I can't have it done here then sent down. I have to drive down. So unnecessary in this day and age.

So I have two weeks left. I'm a little uneasy about it, but I just have to go with the flow. So that's the update. 15 days until menopause...

Breakdown

So here's the truth of it all... I'm starting to have a minor nervous breakdown about the upcoming hysterectomy. And I think I am entitled to feel this way. Minor may not be the right word. You see, I spent about seven hours today wailing in my bed undecided as to whether I was wailing about my pain or the fear of the surgery and more importantly, the aftermath.

I mean, I'm not scared of the surgery itself. I feel like a pro right now and to be honest with you, I am kind of looking forward to the happy gas and morphine drip after all of this pain for so many months. I know it sounds sick and it is. I mean, I am REALLY sick.

I'm freaked out by the logistics of the week of the surgery, since my parents' home will be occupied not by them, but by house sitters, as they will be away, so I have had to divvy up the week's responsibilities regarding caring for Mini and me among myriad of people, which will be hard on Mini because she doesn't do well with transition and frankly, because she doesn't really know several of the people who have stood up as real friends and are traveling up to help out by staying here for a few days at a time then switching shifts. Many friends have been nice enough to set up daytime play dates for Mini which is GOLDEN, because it will allow for her to have FUN with her besties and for me to sleep, while my caregivers twiddle their thumbs and deal with my needy dogs.

But back to the breakdown I had today, it was awful. And it went on all day. To begin with, my assistant has been sick yesterday and today which is fine, we are all allowed to be sick, don't I know it. But today, it meant Mini had to be late for school because Hoovie had to go to the dentist at 8, so she didn't get picked up until 9. In the meantime, my car was towed away because the other day I was driving it and it wouldn't go over 5 MPH and I got a message saying "REDUCED ENGINE PERFORMANCE". Yeah, no shit. I was lucky to get it home.  So the car got towed, Mini went to school and I got in bed and waited for a 10:00a.m. interview with The Hippo, a newspaper out of Manchester, NH with a 206,000 non-repeat readership. So that rocks. And the interview went well, I think. I looked forward to that because then the rest of the day I could go to bed.

Go to bed. Yeah right. When I tell you that the phone rang all day and the door bell rang all day, I mean it was ALL DAY. I seriously almost lost my mind. Around 11:30, just at the beginning of it all I started crying. I just wanted to go to sleep after my third night of 4 hours of sleep. My clock is turn upside down again. I've left a message with Dr. Jemsek about that. Not good.

So all of this noise, and you know how sounds sensitive I am, was driving me nuts and every time I was just about to fall asleep something would ring or knock or beep. Of course I could have turn off the phone, but I was waiting for Dr. Jemsek to call me back so I had to leave it on. And as I cried, I started to think about the surgery and all it entails. Menopause. OMG. I am just about to be 39. The sweats, well that is OK because I am used to that from Babesia. But I read something about hair falling out after a hysterectomy and I lost my mind. Gaining weight. Vaginal dryness (fine that can be remedied). And of course I am going to use bio-identical hormones, but I will have to get tested all of the time to see if my testosterone, progesterone, and estrogen levels are right and you know, I am just generally freaking out.

I suppose it's normal to second guess this kind of thing before it happens and thankfully I have my pre op on Thursday so I can weep with my GYN and ask her all of these questions. I suppose it would be more concerning if I went in with a bugle and some pompoms singing "Ode to Take It All Out", but still, I'm freaking out. And everything hurts on top of it. I am on multiple pain killers and the only one that seems to touch the pain is the narcotic that I try to stay away from unless I really need it, but I suppose tonight is one of those nights and honestly I probably should have just taken it after the interview this morning.

I have cried so much today that honestly, I wonder if I didn't have Mini if I would have survived the day. It's been THAT bad. I'm OK, but it's because I love my daughter. And that's the reality of Lyme. It may be tough to read, but it's true. Lyme is a seemingly never-ending physically, emotionally and mentally painful pit of misery and it feels like every time my dirty nails have scraped their way halfway to the top I fall down again. So am I OK? NO. But do you need to be concerned? NO. And you can thank Mini for that. And you can cry with me because today it just is THAT bad.

Choice Words for Those Who Say Lyme Does Not Exist

We have known for some time now that I am an overmethylizer. A few cycles ago we stopped the prescription Deplin and B-12 injections, which were helping me detox. Most people who have this problem test positive for the MTHFR mutations, for which I tested negative. So, we don't know why I am so sensitive.

I am having a REALLY hard time right now. Beside the excruciating pain I am experiencing from the endometriosis which is out of control because internal bleeding is being caused by my first period in five years, because we just took my IUD out 2 weeks ago. This proves that I have endometriosis and that we are doing the right thing with the hysterectomy, although we already knew that.

Anyway, on top of all of that, the pain is causing insomnia and the overmethylation depression and general malaise. I am exhausted, miserable, and in pain. Pain killers seem to help for a stint, but not for long. And I have physical signs of what I am going through. Thank GOD my boyfriend lives at a distance and does not read my blog, because this is just gross, but it's Lyme reality:

Don't judge. Just call me brave for posting that nasty piece of reality. I have tried to brush that away so many times you wouldn't believe it. But it is what it is and it comes and goes and when it appears I know my body cannot handle the speed at which my organs are trying to detox and my body collapses. And that is what is happening now on top of the endometriosis. 

And so now I am crying. I don't understand how anyone can say that this disease doesn't exist. Spend 5 minutes in this body at any time in the past 29 years and enjoy any one of the symptoms that I may have had at that current time - pain, confusion, panic attacks, social phobias, migraines, loss of feeling in various parts of my body, exhaustion, hallucinations, depression, rage, stiff man syndrome, skin conditions, thyroid issues, white splotches on my skin, burning sensations on the bottoms of my feet, "growing pains" in my thighs, gastrointestinal issues, endometriosis, any number of hormone issues, Addison's Disease, connective tissue disorder, PCOS, degenerative disc disease, a friggin green ass tongue and the list goes on. DOESN'T EXIST? Excuse my choice of words but FUCK YOU.

The end.