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.