Babesia Blues

Photo by and of Lisa

Lying in bed, wasting the day away is everyone’s dream, right?

A day off, a nice little break, a vacation, sure. Day in, day out is getting a little old. I use to be a highly functioning Lyme patient. Remember my post about being the energizer bunny? I used to be able to push myself to the point of collapse, and now I wake up already collapsed.

This appears to be life while treating Babesiosis.

I’m thirsty. I can hardly keep my head up. In fact, I can hardly keep awake. I go through hours of chills, followed by serious, drenching sweats. My skin looks dehydrated. My heart is racing faster than ever. And I can’t do anything productive. I’m sobbing in short burst. I can barely make it to the bathroom. But at least with NO energy, I can’t rush into emotional explosions. *Bright Side*

Such is the nature of Babesia. My friend had Babesia as her primary illness. I have always seen mine as Bartonella, until I treated it really hard. Now, it appears that Babesia has the upper hand. My friend says, “You don’t have good “days” with babs, you have good “hours,” and that is no exaggeration.

I miss the good days. I think I had one last week, after stopping all babesia treatment for more than a week. But yesterday, I started a new product called, A-Babs. A lot of the natrapathic doctors and medical doctors are using it. You typically start with a drop of two. My doctor suggested even 1/3 of a drop could be devastating for me. But I did the 1/3 a drop. And it was terrible.

I’m having hours that are better, but so far nothing good. I’m not going to do another drop for a few days. Yes, I might just be the most sensitive person on the planet. Or at least ONE of the most sensitive. If there is a reaction to be had to a product or a treatment, I will likely be the one.

So, I need to look at it this way, at least it makes this $89 bottle last forever, right?

I’ll keep you posted.

What’s The Big Deal About Lyme Disease, Anyway?

This is a repost from last year sometime.  Thought it might be a good one for Lyme Disease Awareness Month.  Please share the link on your facebook wall.  Anyone can get lyme.  You don’t have to love the woods, you don’t have to own a dog, you don’t even need to leave the city to get it.  So learn about it.  And do your friends a favor by sharing information about it.

I’m thinking there are a whole lot of people who would like to ask a whole lot of questions of me, directly related to my illness. But I don’t know. Part of me thinks my house could be on fire and no one would notice. Everyone is busy. Life is full. Most people keep their drapes drawn and hope that the sick family is okay. Maybe they think we should be well. . and think we must be crazy since we aren’t well.

I start to wonder what people might ask if they didn’t feel like they were being petty or judgmental. So, I’m going to imagine this little question and answer, all the while, wishing people might just ask us for the answers. If people were asking these questions about our illness we might feel a little less isolated.

Question: Why aren’t you well yet? The IDSA (Infectious Disease Society of America) says you should be well with 4 weeks of treatment. It has been more than a year since your diagnosis. What gives?

Answer: Lyme Disease is a complex disease that rarely involves just one infectious disease. Ticks are cesspools of bacteria, parasites and viruses and when they yack into a human (or animal) body, you get it all. Even the IDSA agrees that you need 6 weeks of treatment for Babesiosis. I was never tested for Lyme, for Babesiosis or any other co-infection. So, in 1985, when I got the rash and got sick, I had 10 days of antibiotics. Because of the manipulative power of the bacteria/parasites, my illness went into my nervous system, did all kinds of hiding, and I had beautiful remissions when I was pregnant. So, these little critters have been fruitful and multiplying in every part of my body for 25 years. It is a wonder I am alive.

Question: Why do you say your kids have CONGENITAL Lyme Disease? How can a tick bite be congenital?

Answer: Well, I had the bite and was only partially treated in 1985. Chances are that the infamous bite of 1985 was NOT the first time I had been infected with these diseases. I grew up having imbedded ticks and we traveled often to the East Coast. Both of my parents had obvious symptoms of Bartonella, including difficulty making decisions and society anxiety. When did it enter my system for sure? Nobody knows. But all the infections crossed the placenta, and/or entered the babies during gestation or breast-feeding. When? I know for our little guy, Ezra, it likely crossed in the second trimester, when he died.

Question: Why aren’t your kids well now that they’ve been treated for over a year?

Answer: Well, Lyme and co-infections set the terrain of the body to allow all kinds of viral and parasitic opportunistic infections into the body. My kids were born with chronic lyme. There is no definitive cure. Yet. I hope my kids get well. All I can do is help them change the terrain of the body to better handle the infections and parasites within.

Question: I hope you guys are doing okay over there. I think about you often.

Answer: Okay, so this isn’t a question. If you are THINKING about someone with a serious chronic illness, if you are sending them love and light, if you are hoping for the best, you could be doing something practical for them. They are have issues with memory, often have issues with executive function like returning emails, phone calls, or responding to requests for help, and are most likely extremely isolated as they fight for their health and for the health of their children. They might be depressed. They might spend their evenings surfing craigslist for pets they want to rescue but could never take care of.

Show up on their doorstep, just like the Mormons do and start doing something. Don’t try to plan it, or ask them if you could help, just show up. Do the dishes. Throw in a load of laundry. Organize something like a meal making night, a laundry fest, a cleaning day, or just take the dog for a walk.

Isolation is a nightmare. Anything helps. A simple thing is NOT too little.

Question: So, when is your treatment going to end? Well. . probably never. Will we get better? We hope so. I’ve been sick for 25 years. My kids were born in the chronic phase of the illness. Their immune systems are compromised and they are pretty darn fragile. There is no protocol for Lyme Disease. Every doctor does it a different way, and most doctors do it differently for every patients. And every treatment plan is a crap shoot.

Question: So, here is what I don’t get. You complain about your “herxing”, you talk about how crappy you feel, you say that your kids live on the edge. Why the heck do none of you look sick?

So, my challenge to this question is this, “what does SICK look like”?

Does it look like somebody who only has the energy to bathe once a week?
Does it look like someone who hasn’t had the energy to get a haircut in close to 6 months?
Does it look like someone who can’t push her 4 year old in the swings at the park because she gets out of breath?
How ’bout someone whose kids look like little rag-a-muffins?

That’s what sick looks like. No chemo scarf. No bags under my eyes. To be told I look great though, is to deny how shitty I feel. I joke with my friend Ellen, “you look great, but I bet you feel like shit”. That’s the best thing to say. Acknowledge my illness. Having my struggle ignored makes me feel even more isolated. I feel isolated even when I’m not.

Question: So, what about Lyme rage? Didn’t that chimp have Lyme?

Answer: Yep, the chimp that ripped the woman’s face off was being treated for Lyme. I’m not going to kid you about Lyme and Bartonella. Some people don’t have mood issues with either. Some have anxiety. I have that. And I get confused and lost and sometimes my brain feels like I’m trapped in a Steven King novel. That is why I need so much help. I’m trying to parent children while I have a horror movie going on in my head. It isn’t always there. But when it is, it is really hard. Really scary.

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Choosing Legal Guardians

So, everyone writes a will, right? And, choosing guardians for your kids, you all do it, right?

It is often a sister, a brother, a close friend. People say yes, because it is highly unlikely that both parents will die.

What about our situation? Two years ago we started to get really serious about looking. Robert’s heart was doing bizarre things and I was blacking out with my blood pressure. Then we got caught up in the diagnosis, the treatments and then more diagnosis and treatments and we didn’t want to face the fact that we could both die, and that could was more likely for us than for most couples.

We’ve had a few volunteers for Aidan, but nothing on paper. We’ve had a couple of offers from friends of friends, nearing retirement, but with our isolation situation, we don’t see either of those couples very often.

So, it feels like we are back to square one. Our oldest son is 14, so in a couple of years, and with support from our families and friends, he could push for emancipation, and stay in the house.

We could send them to London to live with their “brother,” but as soon to be newlyweds, I don’t think that would be best for their relationship. Not to mention that fact that grieving the loss of your parents would really suck in another country, even if the people you are living with love you like their own, and you love them the same.

All of my siblings are all old enough to be or are grandparents. Robert’s siblings don’t have lives that would be served by dropping 2 kids into their laps.

I have a few friends who have offered to wash my hair, but take my kids? I can’t even imagine. Maybe the volvo mechanic. Or one of my physical therapists. Their dentist is a nice man, maybe him.

I’m don’t want my kids to end up in foster care because they are too hard to handle, or too medically fragile.

So, what’s a mom to do, except to stay in denial about it, continue to rest to get well (instead of fight to get well)?

That has to be my new mantra. I am going to rest to get well. Allow healing to happen rather than fight for it and push for it. Because I have no other answers.

F-i-g-h-t!

I’m having a seriously OCD night. I’ve been pushing my illness and my recovery into the shadows of my living. Teaching two weeks in a row, every week day, pretending that I’m not sick.

Hard work. And now, with only one day of class left in this session of classes, I’m falling apart.

It’s nearly midnight, and although I am exhausted, I’m trying to figure out how to get my family well. Fuck. It is so absurd, this whole fight. Today, more than any other day, with my blood pressure in the tank, the dizziness, the falling up stairs, the hangover feeling, I can’t even believe it is all real.

Seriously. Sometimes, doesn’t it seem like my family (and possibly yours, too) are stuck in a Salvadore Dali painting? Melting clock. Face suspended in time and space. The Persistence of Memory. The monstrous butterflies. The tigers charging the naked woman.

That is my life. And, frankly, it scares me.

We need more treatment. Better treatment. More aggressive treatment. We need money to cover that treatment. We need to stop going in circles. I can’t work the way I’ve been working. If I don’t, I can’t treat myself or my kids.

I’m tired of the way that this disease works. It is surreal. When someone gets cancer, the treatments are covered. But, with Lyme, are we just supposed to give up? I’m SO tired of taking one step forward and twelve steps back. I’m so tired of not being able to work to my potential, generate income to my potential and support my family the way I should be able to. I want to get well. I want to be well.

I am so tired. I am in so much pain. And, I’m so tired of fighting a losing battle.

Let’s hope tomorrow brings a different energy. And maybe a little more hope.