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.