For Lymies Only, Please

Well shame on me for not writing for more than a month now. In the past, writing has been so cathartic for me, but I have to admit, this past 12 weeks antibiotic cycle has been the worst thing I have ever been through in my life. What I have experienced, what I have endured, has been complete hell. It's so bad and so well, embarrassing, that I am contemplating if I really can write the whole truth. It's been the biggest nightmare of my life.

I knew this would be an awful month and Dr. J warned me that it would be. I had done this protocol before, but then it was two weeks on, two weeks off. This time it was three weeks on then three weeks off and repeat. During my last visit, it because apparent that the Lactoferrin/xylitol addition on days 1-8 are incredibly effective in scratching the biofilm open and this time my Babesia symptoms were released in a hellacious manner.

I was angry again, bordering rages, which I was barely able to fight off, my thighs were in excruciating pain, I was cathartic, and well, all of the symptoms that come with Babesia were back - my psoriasis, raging daily headaches, ACA, drenching night sweats so much so that I had to change my clothes in the middle of the night and change the sheets every day, and a level 9 of 10 pain for several straight weeks that stemmed from my sacrum to the very top of my cervical spine. Yep, Babs came back.

Dr. J explained that the biofilm had broken open (good) and released Babesia nests in my spinal fluid, connective tissue, and brain. Thankfully, my liver did not seem to be affected at the time. He warned me about this protocol, that because Babesia can be dangerous and even deadly for people with weak immune systems, that we had to go against it full force, which meant six antibiotics, two of which were for Malaria, another two of which are sometimes used for chemotherapy, and the others to ward off the Lyme spirochetes from reemerging. He warned that there would be an increased need for assistance. Man, was he right.

I returned home and started my meds. Week One would be the worst, i knew that. And it was bad. The nausea was indescribable, despite taking Zofran and Marinol (anti-nauseas) around the clock to fight it. I was literally in bed the entire week. I might have taken 1000 steps that whole week and that was just to and from the bathroom.  Week two was just two antibiotics and I felt a little better, but the fatigue was just immeasurable and I slept through yet another wasted week of my life. Week three was coartem week, an antibiotic which cannot be mixed with other  antibiotics. And it felt like I had the worst flu of my life. But I got through it.

And now I will share it all. Because people need to know what this disease does to us.

My holiday came around and I had to continue with Miocin and Rifabutin, because I cannot manage my pain during the off-weeks. These infections are just RAGING in my body. During the last week of my 3.5 week holiday, I woke up at 4a.m. one morning (and yes, I have decided to share this for my fellow Lyme friends, fully aware that my regular friends who are reading this will be so grossed out and horrified that I may never find the love of my life) I woke up soaked in urine, from just under my breasts and all the way down my nightie which ended mid-thigh.

In the past, I have awoken to the start of peeing, but I have always made it to the bathroom and it was never on a holiday week. I have never been so devastated in my life. To be 38 years old and go through that alone, it was the most horrible night of my life - or so I thought. I got up, pulled myself together, got in a bath and then threw the sheets and mattress pad in the washer. I went back to sleep with nothing on the bed, as my comforter had been wet too. It was, for me, unimaginable.

I was pissed that this was happening on a holiday and couldn't believe this was my life, but what the following week had in store was truly like a horror movie, the absolute most emotionally excruciating experience I have ever been through. I started the second round of the same three week Babesia protocol. The first night I was very nauseous. I had tripled my dose of anti-nauseas and was eating and taking them 1/2 hour before dosing. But it didn't work. For the next 4 days, I lived a life I would not wish upon a captured terrorist.

I was laying in bed with that squished face you make when you know that you might have no other choice than to throw up. And so I went to the bathroom and started to violently heave for about 5 minutes. Thankfully my mother was here to spend the night, just in case, and she was there to hold my hair. And what happened during these 5 minutes I wish I could forget forever.  I was vomiting so violently that I lost control of my bladder and my bowels and peed all over the floor WHILE throwing up and wailing and then I pooped in my pants. Diarrhea, as we all know is the norm. Belligerently wailing, screaming so much that I became incoherent. It was pure devastation. I could not believe this was my life. It happened again during the week and I was terrified each time I went to throw up. I threw a lot of things away that week, cleaned furiously with bleach, and scrubbed myself so i almost bled. I have never been so disgusted in my life. Thankfully, the week ended on Friday, I continued to vomit through Saturday night, but the rest of me was again under control.

I wondered if I had a bladder infection and went to the hospital for a test and a regular CMP/CBC panel which I do every two weeks. It turned out that my bloodwork was showing pancreatitis and an enlarged liver, both with possible major damage. I was scared to death. Dr. J ordered a CT scan,but that was a week later and by then, while I was still nauseous and experiencing great pain in my sacrum that is impossible to even describe, my Ct scan report thankfully came back normal.

That was a great relief, but the pain, now a 10, in my sacrum was disturbing every aspect of my life. Laying down, sitting up, walking - it was all excruciating. And so two days ago I went for an X-Ray on my spine to see if I have acquired more degenerative disc disease. I already have it in my lower cervical area (my neck), but I am suspecting it now in my lumbar spine, all the way down where your hips attach. I do not have the results yet, but I am moderately terrified that I will again get test results that will show that i am rapidly aging before my time. Of course I try to create the reality that the test will be fine, but it's hard when you are in so much pain.

Dr J took me off my week 3 meds until the CT scan came back and this morning just finished my week of coartem again, bringing back the flu, as I lie here, barely able to move.

I had a visitor this weekend, my blue sky, and he lit up my world again. His visits always take me to a place where I can foresee a happy future, one of family, cooking again, having a real life.  He is so special. But then the coartem kicked in and I was miserable again. I am just so sick of it I could scream. And I do.

Thankfully, I survived Christmas and Mini had a magical couple of days. I really hope that those of you without Lyme will be able to comprehend that what happened this month is not normal. It was gross and horrifying, but not like anything I have ever experienced. I go back to Dr. J on Jan 7 and I suspect he will be incredibly surprised and a bit horrified by my story. The nurse seemed to be a bit freaked out when I called, so please, while this was a nasty entry, know I am still normal and thankfully I do not go through this kind of suffering, loss of control of virtually everything at once, ever.  As you can see, I am terrified about posting this. Perhaps subconsciously this is why I haven't written, but it's only fair, as I honor my promise to reveal it all.

We need HELP. And so I share the severity of this disease and treatment. I hope you will understand.

"Twist" Makes the News

From Overachiever to Overmethylizer

Had this been a normal cycle, I would have started antibiotics again on Monday for the next three week cycle. However, we have thrown in a side order of Thanksgiving, so I am taking an extra week, as the Week One Babesia protocol renders me useless.

I continue to be intrigued by the possibility, the actuality in fact, of overmethylation and how this is effecting my improvement. Methylation itself is a pretty complex process, as I have understood it. In my case, having tested negative for the genetic mutations MTHFR and COMT which can be associated with a disruption in methylation, there seems to be some issue, rather large and disruptive issue in in the process that is throwing a wrench into my body's ability to properly metabolize methyl groups. The language I am using may be totally off, but this is just how I have understood it all. I am doing a blood test on Tuesday morning with my LLND, Dr. Steve, to check to see where in the process my system breaks down, causing such havoc during my antibiotic holidays. 

It's been so bad, that I have had to stay on two antibiotics when I am supposed to be on none. While I am more comfortable this time around in terms of joint pain, my sleep architecture has, once again, been flipped on its head and I am getting up at 2 or 3 in the morning. I have had other disruptive issues, but I do believe that cutting the Deplin, B-12 shots (25,000mcg every other day), and a couple of other supplements, in addition to adding Niacin as per Dr. Jemsek's order and Quercitin and NAC as per my own orders has helped a great deal with the side-effects I experienced after the last protocol when I went down to DC. 

I always try to play my hand of cards as best I know how and I am certainly known for throwing every ounce of strength I have at healing - mentally, physically, spiritually, and emotionally, but this round has made me feel a bit weak. That said, I have forged ahead and made April vacation plans, knowing and creating the reality that I will be well then, ready to take off for seven nights in the sun, far away from here - literally and figuratively.  

I repeat my 3 week antibiotic protocol on Dec 2. At least this time we all go into it knowing what we will experience. This round more than any other, except when I was on the IV PowerLine, has required more outside help than ever. My parents and assistant have had to really step up and take over for a longer period of time than any of us every wanted or expected. But, we will get to the bottom of this and I continue to keep my eye on the long-term remission ball. In several months my life should be completely normal again, or so Dr. J says. In the meantime, I keep on going, am vigorously compliant with my treatment, and passionate about spreading Lyme awareness. 

Organically, my book has sold VERY well, so far. It will be exciting to see what happens when my big PR campaign begins in January. Once I get back from Punta Cana, it will be time to put that tan to some use on tour.

Be well.

Not Even a Chuckle

Yes, it's been an incredibly exciting time. My book finally came to fruition and is out there, emails are coming in from around the country from people I do and don't know, thanking me for putting words to how they feel but have been unable to express. Between the covers of Twist lie most of the energy I had in 2012 and the beginning of this year.

By now, you all realize that my story is not over just because it has a gorgeous shiny cover and a byline. In fact, my story is far from over. Sometimes I wonder if it ever will be. As you can probably tell from my recent posts and the tone of my writing today, I have been suffering greatly as of late. My pain level has reached a new height and I am now at the point where I cannot be in any position comfortably without the excruciating pain in my sacrum. Having had Lyme for 28 years now, I know what pain is, but this is a whole new level of pain, one which has now brought me to a whole new level of medication.

Having worked with a Lyme Literate Naturopath for many years, I realize that my care must be integrative and that I must take antibiotics. I went the Powerline to the chest route for the better part of 2012 and into 2013. I remain on high dose oral antibiotics. And I continue to have Herx reactions that throw me through the roof. But this new pain, this astonishingly deep pain has me writhing in misery and I have given in and tried a new drug of which I only have a few,  to break through the pain so that I can then get on a cycle of less scary drugs... like Vicodin. Yes, Vicodin has now become the new Aleve. You see, it's not my muscles that ache anymore, it's pain from inside bone and from my spinal fluid. And it scares me.

I don't like having these drugs around, so I don't keep many around. I only fill prescriptions as needed, not ahead of time. And today, well, it was as needed. I don't think I have ever felt so drugged, not even when I had my allergic reaction to Lyrica during that hell week last year when I was slumped over like a rag doll. I don't like feeling this way. I prefer to feel clear-minded, in control so that I can use my positive affirmations and brain power to muster some level of physical, emotional and mental strength. But it is what it is and thankfully, I had my assistant here when I took it because I found it to be unnerving. After a couple of hours of nodding in and out of, I guess, consciousness, I called her up to come and sit with me. She saw right away that I was in a different state than she had seen me in and we talked for a solid 30 minutes until I started to feel myself come out of it and be a little more functional.
While it did break through the pain as promised, I feel entirely shattered energetically, as I often do after a seizure. I am just SO EXHAUSTED now.

I wanted to write while still in this aftermath eight hours after having taken the pill. I wanted to write now because if and when I write about it in retrospect it will definitely be funny and witty and full of wise-cracks, but I want to acknowledge how serious this is and how real it is for me and for so many people out there. I have never experienced such pain for such a prolonged period of time in the same place and I know I am not alone. All of these hours later and I can barely keep my eyes open, I don't feel even the sense of a chuckle anywhere within me, and I don't know when it will stop. This, is the grim reality of where I stand right now in my treatment - on antibiotic holiday, yet still on two antibiotics because I cannot even imagine how I would be suffering if I were taking none at all.

And so while I apologize for the somber tone of this post, I think it is important to share because if anyone finds health in humor, it's me and yet, I cannot seem to find any sense of humor at all right now. And that must mean that I am suffering more than I even realize, because I have never NOT been able to write an entire post without SOMETHING funny to say. And I long for that. I could use a good laugh right now, but instead, I will turn on the alarm and call it a night, hoping the funnies will creep back up on me in my sleep.

Full Moon

Tonight is another full moon and I go into this one fully aware - armed and ready. People with Lyme are very often affected by the full moon, which sets off all kinds of havoc in a Lyme infected body. There is very little information available as to WHY this is such a phenomenon, but it is a reality for so many of us.

"So what do we humans know about this subject matter?  Well, we know that a full moon occurs every 29.53 days.  We also know that the reproductive cycle of Borrelia Burgdorferi is roughly every 28-30 days.  What has been observed, but not understood or proven why, is that these two events seem to coincide; they happen at the same time continuously.  Based on these facts, one may be inclined to reason that the uncanny and mysterious affect of a full moon acts as reminder or alarm clock, if you will, for borrelia burgdorferi to reproduce.  Possibly, but many people experience an increase in symptoms in not just a full moon, but a new moon as well.  Without definitive, certain or conclusive evidence, one can only assume there is a mysterious correlation between lunar activity as a whole and Lyme Disease. " -http://www.tiredoflyme.com/full-moons-and-lyme-disease.html#.UojdmWRgb64

We do know that a day or two before the full moon our symptoms begin to worsen and on the actual night of the full moon, we can count on complete insomnia, no matter how many sleep helpers we have - I have 7 powerful pills a night for sleep to change my "sleep architecture", as Dr, J calls it, in order to turn my clock back around so I sleep at night and not all day. But this is not the case during the full moon. 

I have been having complications with Lyme/Babesia acting up in my spinal fluid and it has gotten worse in the past couple of days. I have spent a lot of time under an electric blanket with a heating pad on high on my back. It's rough to say the least. 

So what are my worsened symptoms during the full moon? Swollen joints, increase in muscular-skeletal pain, confusion, exhaustion with inability to sleep, nausea, and etc.  Sound like fun? 

Yesterday Mom and I took Mini to see her first movie in a movie theater. It was great fun to watch her watch the movie. She was very excited and I am glad we did it. In order to get anywhere from our town, we have to drive 40 minutes. On the way home, I began to feel light-headed and very out of it, Yes, I overdid it. When we got home, I have no recollection of dropping my coat on the floor and getting right in my bed, falling asleep immediately. I woke up at 5:30 when Mini woke me to say she had eaten and my mom was going to leave. She played with her iPad while I slept on. 

Mini, having skipped her nap that day, asked if she could go to sleep at 6p.m. I helped her get into bed, put the dogs to bed and immediately fell asleep again. It is apparent to me that 4 hour excursions are not something I am ready for yet. If I can't pull it off on an antibiotic-free holiday, then I am just plain not ready. 

I don't let this get me down, because it is too easy to do that. A quote from the wonderful Kris Carr echoes in my head, "When we accept ourselves, our body opens up and can start healing."  

Books Are Out!

It's been a very exciting AND obviously exhausting week on the home front. My book is finally available on Amazon, B&N and will slowly find its way to bookstores near you. PLEASE! Consider requesting that your bookstore carry A Twist of Lyme: Living With a Disease That "Doesn't Exist". While of course you can order it online, imagine the power the book will have when people stumble across it at your local bookstores. My purpose has always been to raise awareness, so let's get that amazing book cover on shelves EVERYWHERE so LYME CANNOT BE HIDDEN ANY LONGER!

I have spent a good deal of time this week signing books in the morning to those who have ordered off the website. I am still waiting for the delivery of the hard cover books. I can only sign books when I have enough feeling in my right hand, my writing hand, so that can be somewhat limiting. I find myself wiped out after all of these signings and often slump down into a three hour nap afterward. It may not seem like a big deal to sign some books, but to sign them, then package them for shipment is pretty exhausting for a person with Lyme. I will have to pace myself, a hard task, since I find it very exciting.

It took a solid week for me to come off my antibiotics this time and while I am on an antibiotic holiday until December 1, I am actually taking two antibiotics to ease the suffering I tend to endure while on holiday. It's helped a big, but I still Herx and I am very tired.

I am now seeing a new acupuncturist who leaves the needles in your body, with small band aid-type adhesives to keep them in. It has helped tremendously with my spinal pain. I may very well have written about this already, I just don't remember, which is the norm over here.

This morning I decided to just get Christmas and birthday shopping done for my daughter so it's one less thing on my plate. I am thrilled with what I found and I know she will have a couple more things on her wish list for Santa, so I am sure he will pull through too. Nice to have the bulk of it done though.

I haven't written because I haven't much to say. I feel a little emptiness inside my brain, perhaps because with all that I have been working on it's been way beyond capacity for so long and now it's come to a halt. I have a bit of writer's block. I am hoping that will let up as time goes. For now, I live by the hour and so for now, this is all I have to say, but perhaps in an hour or a day or two, I will have something more profound for you to read about. I guess what I really logged on to say is that I am grateful for everyone's amazing support of the book. I can't wait to hear what you think of it.

Climbing Out of the Darkness

I feel like I have been the star of a show about vampires lately. I have literally spent the greater part of the last 3 weeks in the pitch black darkness. This round has been a rough one. The first week was the worst. I was completely not functional, taking Septra, Omnicef, Rifabutin, Artemisinin, Mepron, Diflucan, and Flagyl. This combo is a full-fledged war against Babesia and judging from how I felt and the nearly ten days I spent in complete darkness, my own energy and every ounce of my existence being a temporary casualty of war along with, hopefully, millions of spirochetes and their friends.

Week two was easier on my body - taking just Omnicef and Cipro, but I was still expelling the remnants of the week before, so I remained in a state of emergency, without power physically or electrically in my room for that week.  I do fine on Omnicef, but Cipro for me, like most is very upsetting to the stomach and so trips outside my bedroom remained mostly a direct route to the bathroom.

I just finished Week 3 of treatment, which was Coartem alone, of course with the usual 50 pills a day of neurotropics and natural supplements, and my body, once again took a beating.  I've required a lot of sleep and rest and with that, a lot of help. I am now on a three-week antibiotic holiday, so as not to start the wretched Week One of the same cycle over Thanksgiving.

Most of my readers know that I historically feel AWFUL on my antibiotic holidays, a time when one is supposed to feel better. I never do, although I can at least sit up and sometimes eat a little. I am considered "highly reactive" to everything and will remain on Rifabutin and Minocycline during my holiday, making it not exactly "antibiotic-free". I am, however, willing to do what needs to be done to be gentle on my body.

I had a scary episode five days ago, while lying on my bed. All of a sudden, out of nowhere, my body heated up, I started to itch everywhere and then I broke into full body hives, the worst being on my arms and my bright red face. My Benedryl had expired and I had just thrown it out. So I raced around, trying to find anything that would work. I found a bottle of Children's Benedryl and chugged half the bottle. That helped. In the meantime, I feared my breathing may be effected, so I called my parents and they came over in case there would be a hospital visit. As a Lyme patient, you want to avoid all ER visits unless completely necessary, because if you are to get injected with any kind of prednisone/steroid, it can completely disrupt treatment. Thankfully, by the time my parents arrived, the itching started to calm and Dad had brought real Benedryl, I promptly fell asleep and everything was fine.

I thought that was the end of that, but it happened again last night and I am not sure why. I have been told now to take Benedryl around the clock for 48 hours (and each time this happens) because something from the treatment is blowing up in my body causing me to react. Hives does not seem to be a positive step, but if I look at it as a rash of illness trying to expel itself from my body, I find myself quite content with the idea.

Yesterday I saw a new acupuncturist. She was very Lyme-knowledgeable and I was referred to her by my wonderful massage/physical therapist. After a lengthy intake, we started treatment. She used traditional needles in my ears and I certainly feel an electrical jolt in areas which do not surprise me - liver, spleen, and emotional areas all located on the ears. Then she did energy work to find where my body was calling for acupuncture. It was amazing because she would say "What do you think about right here?" and I would either say "Yes, I have pain there" the feel the pain of the needle followed by an eventual release, or I would say "Nah, I am fine there." "No, I'm not sure about that" and WHACK! YOWZER  You win!

The cool thing is that she uses these tiny needles that you keep in you. They have small caps on them and circular band aids and when they fall out after showering, you thrown them away until the next treatment when you get new ones.  The beauty of this? I have NO SPINAL PAIN whatsoever for the first time in years. I am so thrilled. What a gift.

As of today, I still needed a three-hour nap, but my mind feels lucid and I think I can finally take care of my daughter on my own tonight. That feels very rewarding. Since I tend to have terrible holidays, I expect it won't be this way every day, but I have learned to live for the moment and in this moment, unless I have a crash, I get to be Mommy again and climb out of the darkness.

The book is now available for purchase on the website using PayPal. Gift wrapping will also be an option for the holidays and will be added shortly. THANK YOU to those of you who have already bought your copy. Please consider those around you who may need a copy. If you have a book club, email me about how you can get your free copy. I am grateful for the support I have been shown so far and hope that the book will reciprocate that support through being relatable and common ground.

Halloween and BOOK'S AVAILABLE FOR PRE-ORDER!

Well, I made it through trick-or-treating with Mini, even if it was only 10-15 houses. For me it was quite an ordeal mentally and physically to make it happen, especially in the pouring cold rain, an obvious challenge since we know rain makes all of my swelling and pain worse. It was rough, but Snow White was thrilled with her loot and we got home in time for her to go to bed on time (school night) and me in a tub to thaw.

I still have no feeling in the right half of my right hand. It's been a month now. Clearly the reappearance of Babesia has brought some nerve issues along. It's frustrating because I really need to be able to write and at the moment, I can only type with a couple of fingers.

I had several days since the "CRASH" entry of poor leg strength, but it seems to be coming back a bit. Dr. J has written a script for a wheelchair, which I have avoided but feel more secure having in the car now just in case I want to... go somewhere. I need to go somewhere. Problem is, I spend all day in bed either in pain or completely exhausted. I have now cleared week 2, which was better than week 1 by miles, but still rough. This round has a week 3 involved, so we'll see how that goes. Then I will be on holiday through the end of the month. That said, I am so reactive on my "holidays" that I will still be taking two daily antibiotics throughout to ward away the pain and symptoms that tend to creep up.

I finally finished watching all seven seasons of The West Wing and THANK GOD Josh and Donna got together because I would seriously have gone postal had that not worked out. I am so glad I watched it over 3 weeks and not 7 years or I might have been picketing the producers' trailers...

It's a nice day out. It's very warm for November, in the 60s, and I wish I had the desire to go out. The truth is, I am pretty down these days, having been stuck in this bed and now not quite knowing what to do with myself. My fall in the shower has scared me into going somewhere even for a little while, though I need to force myself to do it.

The book has gone to print! While it won't be ready to ship for a few weeks, you can find it on Amazon now and add it to your cart to be shipped when it's been printed in the next couple of weeks. I am really excited about this and hope it will help so many out there. Please spread the word.

CRASH

Turns out that week one was a complete nightmare. I knew it would be. He warned me. Eight antibiotics at once for five days in a row and on days four and five I added two more. I was virtually unable to do anything that first week. My parents had to feed Mini dinner and read her bedtime stories, then I would hobble to lay in bed with her and listen to a few songs before kissing her good night. It's hard for her and for me.

I had a scary moment on Friday when I was in the shower washing my hair. I had barely even been downstairs all week. Certainly hadn't eaten much. But I managed to shower, but all of a sudden, I lost the strength in my legs and collapsed without warning, crashing my head into the shower's glass door. I am so lucky I didn't shatter the door. But I did feel as if I was a bit shattered. After all, if one cannot safely shower, one has lost a basic life skill of survival. I cried my way through the rest of the shower, sitting on the floor, trying to get the rest of the shampoo out. I used a spray conditioner instead of daring to stand again in the shower. And yes, I am a bit shower traumatized.

I am now on my second week of antibiotics and it is only two. I feel I have more brain capacity back and after a full week upstairs in bed in a dark room, I write to you happily from my couch downstairs. I do not have reliable strength back in my legs and I am thinking about getting a wheelchair for temporary use outside the home. As it is, I go down the stairs on my butt, afraid I will relive the days when falling down the stairs was the norm.

I am still watching the West Wing. I love this show. I am finally at a point in the series that I have not yet seen, so it's fun to see what ends up happening. DO NOT TELL ME ANYTHING. All I can say is, if Josh and Donna do not end up together, I will lose my mind.

As for pain, it's largely managed, with the exception of my legs and my spine, though my spine is better than last week. Concerning is the tingling in my limbs. This should not be happening while on antibiotics, so I need to email Dr. J. Multiple Sclerosis symptoms are not ideal while on the antibiotic protocol, although I am sure it's a Herx reaction. My "sleep architecture" has change and my clock is now upside down again. I cannot fall asleep or feel tired without my nighttime cocktail of meds.

On the upside of life, my book has been sent to print and A Twist of Lyme: Battling a Disease That "Doesn't Exist" will be live on Amazon, B&N, and virtually everywhere in the next couple of weeks and in bookstores and libraries over the next few months. You can also order directly from the publisher at www.archwaypublishing.com (a division of Simon & Schuster). So, that is very exciting. As you can see from the website, I have a cover that is eye-catching and real. It's been in my head for over a year and the graphic artists at S&S gave it life. I am thrilled.

Thank you for continuing to follow my journey. I hope you look forward to seeing its beginning and all that has happened to present day.

The West Wing Marathon

I'm not sure I've ever done anything ALL DAY. Like really ALL DAY. But today I did. Today I spent the entire day in bed. I am not exaggerating. With the exception of frequent bathroom visits, I have been in bed since last night, maybe even yesterday afternoon. One might think it's been good for me and physically perhaps it has, but mentally, I am going crazy.

Of all of the shows I have ever watched, I have never forgotten how much I love The West Wing. And so I have watched episode after episode of my favorite show of all time and I still have several seasons to go. I haven't really been "with it" the whole time, so maybe I will get to watch it again. That's the nice thing with Lyme. You can read a book or watch a show, love it, and then completely forget all about the details so you get to do it all over again and enjoy. LOL. Nothing like a little Lyme humor.

I am also hooked on Scandal now, which I have caught up on. Interesting how all of these DC shows are sucking me in. I do think it's because I am there so much, but I also lived there for five years and have a good idea of the city and how it ticks and I have to say, should life change and the right DC guy ever come along, I'd move there in a heartbeat. Otherwise, it's a no go - to far from my family.

This week has been one whopper of a treatment, as promised. I mean, if Dr. J hadn't given me that big, comforting hug and a "It's going to be OK, sweetie" at that last appointment, I would start to think the dude hated me. But really, he knows what he is doing and I have to remind myself with every ache, pain, and race to the bathroom (for whatever reason), that this is a battle that took 26 years for the spirochetes to become an army and I am only a year and a half into treatment. I knew my treatment would take longer than most. And I soldier on.

I'm not sure if I mentioned the other day how Mini said, "Mommy, when you take your meds on Monday and start to feel terrible, I will take care of you. I am special. I was made especially for you." Tonight she did, as she does every night, but she came come from school and announced "ASSUME POSITION!" and this is how we ended up for quite some time:

 

She is my reason. 

I am hoping for a break tomorrow, but today I added Diflucan and Flagyl to the cocktail, so that's unlikely. Maybe on Sunday, when I get it out of my system, I can bundle up and sit on the deck or go for a car ride somewhere. OOO that sounds risky. 

So, I will try to stay awake for Scandal and then get some more sleep. I'm sure that won't be a problem. 

Day Two - Sheer Hell

I couldn't sleep last night. It seems this protocol comes with a nice dose of insomnia. I spent a good part of the beginning of the night in the bathroom and then I fell asleep and woke up at midnight and BOOM awake for ages. Thankfully, I am West Winging it and the show is nice and calm so I was eventually able to fall asleep after a couple of episodes.

This morning I was very off balance. My vision is blurry and my left foot and right hand are tingly. Most obvious though is my trouble walking, having to hold on to get anywhere. I anticipate this becoming one of those weeks where I make my way down the stairs on my butt. I am experiencing some noticeable pain in my spleen, so I will have to get my blood checked on Friday, sooner if it's too much for me. And unfortunately, my least favorite symptom has arisen again - the limbic seizures where I cry out of nowhere for no good reason. 

On the positive side, my psoriasis is disappearing again and my ACA on my fingers is trying to as well. I am so tired. I need to take a break now. Time for dose #2

I am not sure, but I think my parents may need to assist in Mini's bedtime tonight. I'm going to stop writing now and reconvene with you in a few hours, as that is how I live my life - hour by hour.  

OK,so an hour has gone by and sure enough, it's been eventful. My spleen is killing me and if this continues I will call Dr. J. I just took a Norco (Vicodin without the Tylenol) and Zofran for nausea. I am feeling really iffy right now. I feel like everything is going to explode. I am tired but I cannot sleep. I have the TV on, but I cannot concentrate. I am writing my blog but I am not entirely conscious of what i am writing. 

This is a vast change from where I was three days ago, having been on nearly three weeks of holiday, feeling lucid and able to live some kind of life. I know we are doing the right thing and to keep my eye on the ball, but the ball is blurry. I'm going to leave you now again and see what happens later on today.

It's been a rough day, my dad came over around 2 o'clock just sit on the bed with me and do nothing. I was obviously watching West Wing and trying to get to the expert level on this damn game on my iPad and I just cannot seem to do it. It's making me crazy. We really didn't talk about much beyond the beginning when I told him that my spleen felt like it was taking up the other side of the bed. He laughed and said he had no idea where his spleen was in relation to his liver. I replied that I didn't either until it turned into a canoe in my side. That gave us a good laugh.

I forced down my 4pm meds, a combination of neuro meds and antibiotics; about 20 in all. I'm at the point where I dump them out and then just sort of stare at them for a few minutes and plan my attack. Which ones will I take first? I always take the powdery ones first, the tablets, because they taste so nasty when they disintegrate in your mouth and it's hard for me to swallow right now. Then I follow with the capsules and gel caps. This time I took them with warm water and 4 tsp of xylitol water, which we are using together with lactoferrin to rip through the biofilm and release more hell.

Tonight I just feel kind of like a zombie. Mini came home and snuggled with me for a minute and now my mom is bathing her while my dad feeds the dogs and then Mini. I think Dad may sleep over or at least wait until I fall asleep (yeah right, that went swimmingly last night - not) and then come first thing in the morning.

The worst part is the urgency. It come out of nowhere and you literally have to run to the bathroom but your legs don't work. It's a challenge and very sad part of it. Sometimes I feel like my very functions and rights as a human have been stripped from my life. It's just not a good place to be. This is hard to write about because it is so extremely personal on such a profound level, but it is reality. I want you to know. I want you to know what I and so many others go through.

So, I will lay this computer down again and write about the rest of the evening later on. A tough day for sure.

It's hard on Mini. She just wants me. A few days ago when we were laying in bed she said, "Mama, when you start your meds on Monday and feel sick, I will take care of you. I am special. I was made especially for you." And she does help me in so many ways. And here I am, a helpless mom, unable to help her with the most basic of things. My mom bathed her tonight, dad fed her and now he is reading a book to her. I will then climb into bed with her for two songs, as opposed to our usual four songs, hoping I will not have to run to the bathroom in the middle. This poor kid.

Dad was going to sleep over, but I just told him it's OK to leave. There is really nothing he can do tonight. I am not having seizures or losing function in my legs and falling, so he should go home and get a good night's sleep. I think I will call it a blog night for now. If something exciting happens, I will let soldier on with the blog tomorrow, but since it's the same protocol all week, I suspect that it will be mostly the same, with a side order of some seizures, weak legs, speech and memory issues. As I explained to Mini tonight, it's only temporary and I am hanging tough. Even through the tears, I keep it tough and do as I have been told. We are after these little bastards with a vengeance and I don't plan on letting up anytime soon.  

Kidnapped

My body has once again been kidnapped. It's amazing how quickly it happens. This round we are going full charge against the Babesia and Lyme which were successfully released by ripping through the biofilm last cycle by using the usual antibiotic cocktail and lactoferrin and xylitol water, a treatment that no other doctor is using yet. It's astonishingly successful. 

And so we have no choice but to attack what has been unleashed. I felt it happen all last cycle, as my spinal fluid scream in pain from my sacrum to my C1. I had uncontrollable constant migraines, exhaustion, joint pain, rages, some hallucinations, definitive memory loss and many other symptoms. 

And so tonight I lay here under my flannel sheet under my new comforter and am realizing that I will have to add an electric blanket to the mix and increase my dose of clonidine if I am to get through this fall without falling back into my regular state of hypothermia. 

About two hours after I took my cocktail of the month, which is more like a Long Island Iced Tea than last month wine spritzer. Yes, my ass is about to be thoroughly kicked. WIthin a couple of hours after the first dose, this was confirmed by my assistant who asked me if I knew the right side of my face was drooping. I didn't. I knew my tongue had been tingly and numb, but not my face. So I looked at my face and sure enough - Bell's Palsy. Thankfully, it only lasted for a couple of hours, but it is likely to come back and join the crowd of symptoms for a longer stay, thinking the more the merrier.   

I stayed in bed until 3pm when I decided I would go to my daughter's dance class because soon there will be days I can't. It took every ounce out of me, but I made it and she was very happy. We got home and she got a little sneaky then fed part of her dinner to the dog pretending "he stole it", so I had to redo her dinner a bit. I was spent, but I made it. 

The stomach issues are back. This is my least favorite because it keeps me up and is generally unpleasant, but it is reality.  I know all of you going through this know what I mean.

So, Day 1 was ok. There are still a few hours to go, but I have survived. We'll see how tomorrow goes. Usually, the schedule is Monday, Wednesday, Friday, but this time we're doing Monday - Friday without any stops. This should be a pretty good weight loss plan.  

There will be no escape from these little kidnappers for a few weeks, but I will get away. In 3 weeks, I will slowly make my way back to myself during the first week of the holiday and then I will have a good week. Then I get to go through it all over again. But I soldier on. 

Thank you all for the well wishes and requests to continue blogging. As you know, it helps me immensely and I appreciate that it helps many of you too. I also appreciate those who read in support of me and just to learn about Lyme. It's a pandemic that must be screamed about until we are heard. We exist. We hurt. We are broken, but not unfixable. We want our lives back. And there is no one in the IDSA or AMA paying any attention to us, because our disease "doesn't exist". 

And this is precisely why my book will be released four weeks from now. I hope to support my fellow Lymies and their loved ones, but also make some noise. It's been exhausting writing a book while going through treatment, but I have done it and I am proud of it. Four weeks. It's overwhelming. 

Now I will go back to The West Wing on Netflix and fall asleep. That sounds just right. 

"Unfortunate Detour"

It's been a very long time since I last blogged and I apologize for that. Between an absolutely hellacious 6 weeks and putting the finishing touches on the book, I just haven't had it in me. The last cycle had me in more pain that I have experienced in over a year. Every joint in my body was screaming all month and against my usual no-Vicodin policy, there were a lot of painkillers during the whole cycle. My psoriasis and ACA are back as well. My nails have pitted for the first time in ages. I've had terrible episodes of tingling in my limbs and it all just seems endless. New was the feeling of a bruised eyeball I have had for the past week. He looked to find  good deal of blood on the eyeball. Who knows what that is from?  It's been pretty bad.

Worst was the pain I felt from my sacrum all the way up to my upper cervical area. My headaches returned with a vengeance and my feet felt three times their normal size and were hot as can be. My leg pain on my thighs were a nightly nightmare. I had trouble with my words a lot. I also had some clear-minded days while on holiday. It's been nice to be able to articulate myself with spoken words and although I am still not driving (by my own decision), I had a couple of really "normal" days, whatever normal is.

I still struggle with knowing if my normal is the same as the "normal" of people who don't have Lyme. I am sure that those of you who have Lyme or other chronic illnesses can relate to that.

I returned last night from DC where I saw Dr J. It was not how I had wanted the appointment to go.  My physical strength and tests failed miserably and were much worse than they had been. I had no reflexes, no hip or know strength, and pretty much everything he touched hurt a lot, but I did have the cognitive ability to explain everything that has happened. The good news is that while my spleen and liver are reacting and getting their butts kicked, they remain normal size. So that is good.

His words struck hard, but he has become a friend of sorts, at least in my eyes. We know each other now and my appointments are very predictable and honestly, I love seeing Dr J. I feel safe and I admire his brilliance and know he will help me kick this. His words "an unfortunate detour," were pretty devastating to hear. I am tired of the setbacks, of the time I missing with my daughter, of being a prisoner.

During the last two cycles we have integrated a new trial he is doing to break up the biofilm, the jelly-like armor that surrounds the spirochete bacteria and cyst that hold the infections. He succeeded, which is a good thing because now we can get to the spirochetes, but the bad thing is that my Babesia co-infection has been released and is in full force and so while I am so reactive and fragile to all treatment, he expressed that we have no other choice but to go World War III on this. And so my treatment, which had been incredibly pulled back last cycle, is now tripled and we have added two anti-malarials which I have taken before and they have absolutely derailed me to the point if incapacity.

This cycle will be 12 weeks long. Three weeks on antibiotics, then 2.5 weeks off. This will take me straight through the holidays and will make it hard for me to function at all, much less keep my business going to pay my bills and also do publicity for the book, which should be released in about four weeks.

It's not often I get completely overwhelmed, but I am completely overwhelmed. I could use some support. This one is going to be a rough one. I will try to blog through it, as it helps, and I know you want to be updated as to how it goes. I appreciate your readership and support - more than you know.

The Full Moon

It's a full moon and I am back in treatment. My two weeks off were pretty good I would say, with the exception of some excruciating joint pain and thigh pain. But now it's back to the grind and I am wiped out. But the full moon keeps me awake despite my 10 pill sleeping cocktail and here I sit awake, not able to sit up or do anything, but awake.

I haven't blogged in a while and the reason is... I forgot I had a blog. My short term memory is kaput and the only reason I remembered I have a blog is that someone asked to join my book group on Facebook.

It's been an eventful couple of weeks. We made it to Maine for 2 nights with the help of my parents. I laid down on the couch for the most part and have never slept in a more comfortable bed. It was hard for me to get out of it. There were lots of naps and lots of going to bed early. My parents were with us and Dad was a great camp counselor for Mini and took care of occupying her all day. I was able to play a couple of hands of Old Maid and even went fishing once. I caught nothing. Oh well.

Tomorrow I have gentle and restorative yoga. I am looking forward to it, but at the same time, I am afraid to go knowing the state I will be in. It should be a challenge. I may take my new assistant with me in case I need to leave early, but they are very good at this yoga place and intuitively know when a member needs something, so it should be ok. I hope I make it. It does seem to help open up my vertebrae and we know the Lyme is in my spinal fluid, so this is an important discipline I must follow.

I don't have much to report, other than I feel like crap and need help with everything. I can barely move. I did get to see my blue sky on Sunday and that brightened my week. I hope to see more of my skies soon, but the situation is complicated and I really cannot handle complicated right now. It's a tough puzzle, but one day all of the pieces will come together into one big blue sky. I look forward to that.

I hope all of you are feeling ok. I know I have many readers with Lyme and I want you to know that I am thinking of you. Get some rest. Hang in there. Trust your instincts. Just be.

Wake Me Up When It's Over

There are things in life that go smoothly, without a hitch. Then there is my life. I am really having a hard time emotionally right now for so many reasons I cannot even go into them all.  I have been having real panic attacks lately, that don't seem to completely go away even with Ativan or Xanax. Believe me, I have gone the natural calming root and at this point in my infection, I use natural supplements as a compliment to my western medicine approach.

My stomach has been very nervous now for a couple of days and it is getting worse. I am feeling insecure and am crying A LOT, especially at night. Sometimes I find it hard to even get through a conversation without the tears flowing. I am stressed.

I wonder if it has to do with the sudden change in weather. It's extremely cold now and tomorrow we are supposed to shift back into the 80's and 90's for a few days. The weather beats my body up and I get very anxious and deal with a lot of pain when this happens. I have no real pain to speak of right now, besides a completely locked jaw, but I know it will be back with the hot and humid weather which is to come.

My new assistant is working out well. I can relate to her on a different level because we are the same age and some of the personal stuff I am going through I can really sit and talk to her about and realize that I am not alone in my struggles, that these things happen to us all at some point in our lives, especially when things tend to work out in the long run. But it's hard and the pressure is on for the conference which I leave for on Thursday. I am being driven down by a driver and brought home by my sister.

I miss the days when I could hop in my car and go where I wanted, when I wanted. I hate having to coordinate my life around other people's schedules and feel like a burden. I just hope the conference rooms are not as freezing as they tend to be, but I am going armed with warm clothes this time, really warm clothes and maybe a blanket.

I am stressed about going away. Stressed about being in Providence, where I grew up, and stressed about meeting a friend I have not seen in a while. And my stomach is in knots. I hate the way I feel right now. I just want to go to sleep and wake up when it's over.

Back to Reality

It was just two nights away, but two nights that counted. There is something about that cabin that relaxes me. It been a haven for me since I was a child. It belongs to the son of my father's late mentor, so we have been going there forever. We came back energized and rested. I am also in hot pursuit of the mattress that was on the bed I slept in. Holy moly. I am all over that.

My new assistant, Julie, starts today. Thankfully, I do not have any pain yet this morning, so we are going to hit my walk-in closet and see what we can donate or organize. It needs to be done, along with my daughter's playroom (next since she is getting a dollhouse my dad built as soon as there is room), and then the basement. Not sure how I feel about that one. This is New England. I am sure we have had some roommates.

I could crash at any moment, but it is what it is. On Thursday I am off to RI for an Executive Conference for work. Some people don't understand how I can do this if I am so sick, but I have to do it for my career. It's what pays the bills. Sometimes I check out mentally, but showing up is half the battle and I always pass out cold at night. I only have one presentation to do this time, which helps me immensely, although I am always happy to share my knowledge and experience with the group.

Finances are TIGHT. Ugh. These medical bills and not being able to work the way I am used to, 95% from my bed, have finally taken their toll. I managed to soldier my way through for two years form my bed, but now I see during the last two months that it's caught up with me and I am in a little it of panic mode. I need to get out there and do a few one hour presentations each month on my non-treatment weeks or I don't know what will happen. I did much better with the IV, as you know, and these oral meds are kicking my butt.

No matter what I do, I need to sleep from 2-4. It is what makes me function. I sleep so hard during those naps and I look forward to them. My eyesight is decent right now with glasses, so last night I started a new book, Proof of Heaven, by Eben Alexander, M.D. he is a neurosurgeon who has lived his life scientifically, who died and came back to life, remembering what he saw when he was dead. I am looking forward to getting into that part.

I am still not driving, but having Julie gives me more freedom to get out of the house and she is more flexible with her hours, so I am happy about that. On days i have energy, even just going into town feels like a bit of freedom.

In any case, I am thankful for a good start to the day for once and hope it will continue for a few hours. Thanks for joining my continued journey. Please do comment on the blog so we can create some buzz for the book release. The more visitors and comments, the more media will care and share my experience with Lyme, shining some light on the disease and supporting others with Lyme and their loved ones. Thanks again for your support. It feels good to be blogging again.

A Weekend in Maine

We're spending this weekend in Maine, in a cabin I have come to since I was a child. My parents brought us here knowing I needed to get away from my house, which has been my holding cell for so long. It's freezing here. I mean really cold, but I am sensitive to the cold, so maybe I am just exaggerating.

On this treatment round I have now noticed a real rhythm to my fatigue and pain. I wake up with Mini around 7 after sleeping very hard with my "sleep architecture concoction". I take my thyroid pill first thing and it takes me a chunk of time to wake up. Then I get up and take round one of pills - on an antibiotic off-week, it's about 18 pills in the morning. Then I spend the morning kind of awake, sitting, trying to get stuff done. My feet are bothering me a lot. I keep telling my massage therapist that I wish she could just crack my feet a thousand times. Everything just feels so out of place. Bartonella.

By lunchtime, I get hungry (finally) and eat some kind of meal. If I am at home, sometimes I forget, but usually it's a half a sandwich or some wonton soup from Trader Joe's or something. And then by 1 I start to crash, dead asleep by 2p.m. This is perfect because it's Min's nap time and she knows she needs to stay rested and quiet (if not asleep) until 3:30 when she can play her with iPad until 4p.m. when she is allowed to wake me up.

This is the roughest time of day for me - from 4pm - 7pm because there is so much I have to do with her and my assistant has left by then. We play, I make her dinner, feed the dogs, throw her in the shower, jammies, read books and get her in bed, asleep by 7. Once that is done, I go straight to my bed, and bury myself in my comforters. I work, blog, watch TV, stare at the ceiling, etc. But this month, no matter what I am doing, I sit in that bed and cry. These are seizures that have been recurring now and I need to do something about them.

While I am in bed, I start to notice the leg pain creeping back,feeling swollen in my calves, numb in my shins, and painful in my thighs, radiating up into my hips. Enter the Vicodin. This pill is so hard for me to swallow - pun intended. I spent so many years working in a naturopathic medical practice and yet here I am, pounding antibiotics and now Vicodin. I have been having consistent panic attacks - enter Ativan (which I take 3 times a day anyway) AND now Xanax when really necessary, which has been more frequent lately.

I am extremely emotional these days. I think it's all just taking its toll on me and besides being sick and having a child, I have the usual professional, personal, and financial stress of it all to deal with. It's caught up with me and I am pretty overwhelmed. And so flow the tears as I write.

I was talking with my dad this morning about it all and for the first time said, "if I ever get rid of this thing"and he agreed. Will I ever get rid of this? Probably not. Will I feel infinitely better? I believe I will. I will do everything I need to do to get better. I have come a long way with Dr. J, but there are setbacks and he has described my case as "building the plane while flying," mostly because I have adverse effects to most of what he does. I don't know if it's because of a 3 decade infection, if it's because I have it in every section of my brain while most people only have it in 2-3 parts, or if the fact that I carry both the American and European strands complicates it all. There just isn't enough research to know. So I am a plane being built in the air. SUPER.

I have noticed that my spine is giving me trouble again. I have massive pain in my sacrum all the way up to my upper cervical area. We have known for some time that my spine has been greatly affected and when that is in action, it's brutal. I have a lot going on to distract me, but it's the pain that manages to outweigh all distractions.

Now that I have started to suffer from the cold again, I will need to start taking saunas again. I was unable to do so while I had my PowerLine, but now that it's off, I can use it again. Many years ago, when I was diagnosed with CFS, fibromyalgia and Addison's Disease, my grandmother was nice enough to buy me an infrared sauna, a dry sauna which penetrates an inch beneath the skin. This helps immensely. Problem is, I always forget I have it because I forget everything. But now, I am cold enough on vacation to remember, so hopefully, I will remember some days at home.

Yesterday I had a very exciting phone conference with the designer of my book cover and interior. Thankfully, he loved my cover design and we are rolling with it. The designs should be done by Friday and then I will be able to combine my favorite parts of the 3 mock ups of both the cover and interior designs. Then I am able to go through the book one more time to look for printer errors etc. And then... they set up the printer.

It's all happening now. The sooner we get the book out, the sooner people may learn more about what it's like to have Lyme and hopefully those who know they have it will be able to relate to parts of it and not feel so alone. It's a long and winding road, this thing they call Lyme. I have known my contribution was meant to be in the form of a book, so I am excited to get it out there and do what I know I have been called to do.

Book clubs are starting to contact me and I am suggesting a January or February read if you are setting up your calendar. I am looking for contacts of book clubs (online and local) as well as book bloggers. If you know of any, please let me know.  Thank you, as always, for your support.

Every Single Joint

Everyone who has followed my journey since I began blogging knows that holidays have historically been very rough on me. This has continued into the oral antibiotic phase, which I will continue for at least another year. In fact, I have had a much rougher battle against the oral meds than I did the IVs, so much so that at my last appointment in August, I asked Dr. J if we should consider putting the PowerLine back in. The jury is still out on that one. We will revisit the topic in October when I go back to DC. It's been so bad since the removal of my PowerLine that I didn't have the energy to write new posts, as I was adapting the old blog into a book, hoping to get it out there to help as many people as possible. Yesterday I found out that the book should be ready for release in November.

Today I am only two days into my holiday and every single joint I have from my pinkie toe to my upper cervical area is SCREAMING in pain and swollen to the touch. I had planned on trying to get some work done tonight, but I can't concentrate, so I lay here on my bed, from where I have worked for two years now, and write instead. I know I will be parked here for the night because I just went to brush my teeth and every step felt once again like shards of glass were beneath me. My right ankle feels as if it might be dislodged, but I know it's not. The arches of my feet are killing me. Damned Bartonella. And then there is the Babesia which has reemerged. I have been having some rages, now subsided by some meds adjustments, but mostly, that gross sticky night sweat is back and my headaches are more frequent.

This summer I spent the entire time in the dark in my bedroom, with the exception of a few days when I made it outside. I did make it to the deck for 15 minutes here and there. It was, needless to day, not what I had envisioned for my summer. Tonight it's supposed to be in the 40's so, summer is over. I will have to wait until next year. Hopefully then I will feel the way I thought I would this summer. I also had an emotionally rough summer, so I shut down completely for a couple of months. Such is life.

I just try to keep my eye on the ball, but it's hard. So many people just don't get it and while the vast majority of people are very supportive, you would be shocked to know how many unsupportive people there are out there who have Lyme themselves. One would think that we would be a stronger force together, but unfortunately, we have issues with our brains that make us angry, in pain, and emotionally unstable. I saw so much of this in the Lyme Literate Doctor's practice I worked in before that I made a conscious decision not to read other people's blogs or attend support groups, because mostly what I have witnessed is that many people with Lyme, including me some days, are just grumpy. And rightfully so.

People think they know you just from your own writings and this is certainly what we set ourselves up for when we begin writing, but I have always maintained that blogging is a means I choose to process what I am living with. Yes, what I am living with. No two people's Lyme experiences are the same and so my experience is mine alone and not even some of my closest loved ones get it. I don't want to talk about it. It makes me cry. I write instead, hoping it will help people out there. It's what I can offer right now. Maybe one day when I get to the long-term remission phase that Dr. J keeps mentioning, if I ever get there, maybe then I will have the energy to help others in another regard. Until then, this is what I can do.

I have no energy for research, nor can my eyes look at a screen for too long. I tend to write my posts in short chunks. I don't ask others for advice, rather support. I go to my doctor for advice, because I am not a doctor, even though I am very familiar with the clinical side of Lyme.  I am interested in the research, the articles, and whatever is out there, but I do not search for it. Between telecommuting from home as much as I can muster the energy, which has been a dramatic decrease in July and August, taking care of my daughter, and working with my editor and publisher to get the book out at a pace I can handle, I am spent.

Sometimes I stare at the author's photo of me because it took so long for the makeup artist to get my face to look like that I wonder what I REALLY look like to others. I am so used to seeing my own face and now that I am having real issues with hyper-pigmentation on my face, I am starting to look a little different.

It's a long and winding road for sure, but one that I have to be up to the challenge for. Some days I am not up to the challenge and as such, my daughter learned over the summer to get dressed, brush her teeth and come in and snuggle with me watching some cartoons while I lay there in bed with her until one of my parents came over to play with her or take her somewhere.

Today I hired a new assistant, which feels like a relief. Looking forward to knowing someone has my back again, even though it's only been a week since my last assistant moved on. It will be nice to have someone around to help with what I cannot keep up with, which is pretty much everything.

It's 8:15pm now and I have been pretty depressed lately, more so than usual, so I am going to take my nighttime meds and go to bed early, as I have been doing for a while now, even though sometimes I am still up past midnight anyway. I am feeling my fifth anxiety attack of the day make it's way forward, so it's time to acknowledge that all of this venting is not helping my stress level. Time for Plan B, maybe C.  I'll write again in a few days, even though the Lyme talk often sounds like a broken record.

Blue Skies

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. 

Tonight I lie here alone, watching Gatsby. I am unusually inflamed in all areas of my body, but especially in my legs, starting at my thighs, moving down to my calves and then my ankles and feet. They are pitted when I poke them and I know that the dreaded low barometer has struck again.

Many people who are new to Lyme are unaware of the effect that low barometric pressure has on the level of pain we experience. I have joked my whole life, not knowing I had Lyme, that I was like a cow, in that I could tell you when it was going to rain or snow two days beforehand. I am more reliable than any meteorologist out there. It's the same with the humidity. I LOVE the heat, but the humidity kills. me. Arizona often calls me for this reason. The dry warm air seems like an intangible dream to me. If I didn't have all of my family close by, I would likely move.

So my feet are ragingly uncomfortable. I have no appetite at all, which is no change for the past several months. The joints in my fingers are swollen. In fact, I think every joint in my body is swollen. And I feel sad. Sad that I am 38 year old and my life looks like this. I know it could be so much worse, but this just flat out sucks.

Mini has learned to ride her new bike really well. There is a seat for her baby, Alicia, and a basket in the front and a bell. She knows no greater love thank to ride that bike and ding that bell until everyone on the bike path is ready to rip the bell off the bike. It's hard to believe my baby starts preschool on Tuesday. I hope I get to enjoy that day with her. I wonder what that day will hold. The forecast is for four days of thunderstorms and my body agrees with the forecast.

And so here I lie, as unable to focus on anything as usual; watching the movie, working on my month's end for work, preparing for the book release, and missing someone special . It's hard to focus. Because when I focus, I face the truth. My life is in pieces and the way I live my life is to grasp at each broken piece and hope that it won't all come shattering down. And while what I write is raw, real, and honest, I don't want to face the truth, for the truth is just too heavy for me to bear right now.

Welcome to my new blog - A Twist of Lyme

The blog world is not new territory to me. For many years now tens of thousands of followers have watched me go through the highs and lows of life. As you can tell from the title of this blog and my upcoming book A Twist of Lyme: Battling a Disease That "Doesn't Exist", this is one of my life's lows.

The beauty of it is that within the darkest moments, there are glimpses of light. I am known as a raw and honest author and writer. I will hold nothing back. You will hear the good, the bad, and the... really gross. Because the fact is, having had undiagnosed Lyme for almost 3 decades, treatment is sometimes... really gross. It is always miserable, usually very painful, and completely, utterly, frustratingly emotional. And then there is the exhaustion which I really cannot describe because I have no frame of reference. I have always been this is exhausted, although the treatment brings it out 10 fold.

I have now been in treatment for Lyme for 26 months, having started with a Lyme Literate Naturopath, but when we started treatment, we didn't realize the scope of my infection, all of which I recount in my book. So, I stopped antibiotic treatment altogether when I started seeing Dr. Jemsek because there were a slew of tests that needed to be done, because we needed to stabilize my system, and because I was so fragile that virtually anything could have incapacitated me. I will not repeat what I have have already written, but that is the background.

I am now in month sixteen with Dr. Jemsek and, while I have come a long way, I sure would love to be a miraculous Lyme-free specimen, something which I will likely never become.

I don't live a normal life. My parents bear an unusual amount of the burden of my 38-year old life, mostly by taking care of my nearly five-year old daughter. My assistant quit yesterday. She got a job at a school and needed benefits we couldn't offer her. She was one of my bright lights. And today was her last day. That makes me sad. Very sad. But it was her turn to fly, as I have done so many times in my life and with her new marriage comes a new career and I, of course, wish her well. It's been a much more fun 1.5 years that it would have been without her.

But that leaves an immediate need for an assistant and, to be honest, I really don't want anyone all up in my business. It gets ugly around here and this is not the life I envisioned, although it is the life I am living. So, with the pressure from my parents to find a new assistant, I find myself stifled in utter terror, imagining who could possibly take her place. And so here I sit, three months after I stopped posting on my last blog and venting through my writing again.

It's 6:30p.m. and I am in bed, watching my daughter try to do handstands. Could get ugly. But then, what fun would it be to be a kid without a little handstand accident or two?

So if you are new to me, welcome. And if you have been following me through the years, thank you and welcome back. Your silent support keeps me motivated to feel better, no matter how badly I feel.

I don't have an exact book release date yet, but it is coming. I hope you will all support my pursuit of getting the word about Lyme out there not only by buying the book, but by sharing it with vigor. My purpose in writing it has always to bring about Lyme awareness on a while new level and my publishers and I have had no luck finding a book like it - written entirely by a Lyme patient while IN treatment, not in retrospect. So, please, share away and get the word out.