Tag Archives: congenital lyme

Blog This SH*#$

Thanks to a dear friend and fellow blogger, I’ve got my fingers on the keys, again. Not that the nudge will get me back to blogging regularly, but today, I will. And maybe tomorrow. Facebook and twitter just seem so much easier. So much faster. But I miss blogging. So here goes.

My sons were never vaccinated. I get grief about it from people quite often. But never from doctors. With the history in my extended family and with my kids living on the edge, it’s just a good thing that I didn’t do it.

But, the whole PANDAS diagnosis/research seems to volley around the issue of vaccines. What does an unvaccinated kid who gets a “strep on steroids” infection look like? How do we treat him?

The answer so far? We don’t know.

So, yesterday, I packed a rental car full of things to do and food to eat and went to see a doctor that seems to get both Lyme and PANDAS, at least a little bit.

The journey was worthwhile, as always. I made him laugh. The little guy made him laugh. He made me cry. All in a day’s work for a mom parenting kids who live on the edge. And he told me that you usually see a connection between a PANDAS diagnosis and vaccines. Not in my world. So it seems more complex, again.

Sometimes I forget how sick my kids are. Especially the little one. I just keep keeping on, and the doctor visits are highlighted with all the good. The “upward spiral” and the “good grades”. And other days, we look at the shadow. The under belly. The sh#%(.

My kid is sick. Some days, I just don’t even want to talk about or think about how complex his issues are. The hardest part is that so far, I haven’t been able to find anyone who really gets what’s going on with him. If I were a different kind of parent, I might just look at him, ignore the dark circles under the eyes and just keep keeping on. But I don’t. I push for answers. I push for him to get well. I hope that the teenagers frankenstein-looking lymph nodes doesn’t mean another flare is on its way, or that I’m too busy helping one kid that I’m playing ostrich with the life of the other. I search for treatments, money, the next great hope for a cure. Heading down to the lab to get some subclass deficiency and immune issue tests. But waiting until AFTER Valentines Day. Blood draws WIPE this kid out.

It’s not one thing. That, I know. If it were, I’d be selling some sort of MLM product that had cured us all. Instead, I’m back to the Rubik’s cube. Or just STILL HERE.

 

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Forgiveness

I’ve had a whole lot of therapists in my time.  I’ve dumped a few, one has died, others I just stopped going to and they never called to check in on why I left.  But there’s one that keeps coming back into our life.  My husband saw him 13 years ago for Life Coaching, and then on and off we’ve seen him as our relationship coach (makes it sound like we are proactive about the relationship, rather than trying to put out fires, doesn’t it?)  We’ve been seeing him for the past couple of years as we deal with all the relationship issues that tend to spin around a couple that is dealing with a chronic illness (or 2 or 3 or 4).

I got a text from hubby this morning, reminding me that we had an appointment, but he had to work, and would it be okay if I went on my own?

Ugh.  It’s a lot of money to waste, so I went.  And, I was okay with that.

I walked into the office with the DSM IV under my arm, a little light reading swiped from the bookshelf in the waiting area.  Clearly, I sent a message of, “I mean business,” and “I’m ready to pathologize myself!”  ; )

I thought I would be nervous. . but we jumped right in.  John has a way of getting to the core of issues. . inviting you just to crawl into the belly of the beast.  One session with him is like 6 months worth of a mediocre therapist, and believe me, I’ve seen plenty, I’ve gone to school with a few, and I’ve heard about even more.

I told him that paying him was like doing my own psychic reading, and having him as a witness.  And it was worth every penny.  My heart just cracked open and I saw truth.  Well, at least after we argued about my enneagram and its fondness for suffering.

I need to forgive myself.  For being ill.  For not opening my arms and my heart to the Faculty member at my college who cornered me in a hallway and told me that she thought I had a chemical imbalance, soon after the bite, instead of pushing her and all the people who cared about me away.

I deserve to forgive myself for not allowing myself to be vulnerable.  I was trying to make a name for myself in a male dominated profession.  I believed I had to hide behind my toughness–my ability to leap tall buildings in a single bound.

I need to forgive myself for believing that my natural treatments, my holistic work, my diet and my yoga were the first line of defense to my issues.  I need to let go of the “what ifs” and the “if onlys” and just accept what is here.

I need to forgive myself for passing these infections to my kids and to my husband.  And stop pretending I’ve already forgiven myself.

I deserve to forgive myself for not having all the answers.  For not knowing that my kids were infected.  For not knowing that all of my seemingly little issues were actually really big, and far beyond what I could handle myself.  For denying my gut feelings.  For trusting people who said they could help me, and for not recognizing that they were full of ego, not care.

I deserve self-forgiveness.

I get to soften to myself–stop thinking that I have somehow failed because my novels aren’t published, and I’m not famous.  I need to forgive myself for not “being all that I could be” like the guys in those Army posters, or the people I went to College with.  I need to stop believing that because I haven’t accomplished all that I thought I would by this age, that I haven’t made an impact on the world.

I need to see myself as a beautiful result of every moment, every decision, every happening in my life thus far.  The joy, the initial infection, the hope, the chronic nature of my illness, my creativity, the difficult treatment.  All of it.

Radical Forgiveness.  That’s a tough one.  But I’m giving myself the invitation.  If I get through this lesson, I might actually start believing there is divine order in the world.

That would be a miracle.

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.

Let’s Step On The Gas!

So, today, the little red wagon had two flat tires. Metaphor for a life out of control? I think so.

Fast. Fast. Fast. Hurry up. Go to Circus. Get to school. Get your homework done. Walk to pre-school. Teach yoga. Teach creative writing. Plan summer classes. Make enough for the house payment. Get to the post office. Keep the house clean enough to be safe. Rest? Heal? Treat aggressively? No time. No money. Sorry!

When I realized that we couldn’t handle our lives the way we were going — the aggressive treatment, wanting to treat harder but not having the support around us to do that, I knew I had to slow my treatment down. I didn’t slow down the kids, but I knew we couldn’t do it all. And now, the lack of intensity in treatment is causing my symptoms to worsen.

The reason why people with cancer can treat with high doses of chemo and radiation? First, because it is rare that more than one person in a family has a serious, life threatening disease. And secondly, because people rally around cancer patients. It is an intense, treatment program, with a long recovery program, and I’m not making light of that. And, of course, not every person with cancer has a support team behind them. But lyme isn’t like that. It is a very long treatment program, and then, there is long maintainence. We, as a culture like intense. We like diseases that we understand. We rally around, even thrive in the intensity. But invisible illness aren’t glamorous. Because Lyme patients, for whatever reason, don’t get that support, our treatment protocols can only be as aggressive as our support system allows. So, either you skimp on treatment. Or you slow down your life.

For the past many months, I chose to slow down my protocols so I could do both my life and treat my disease. And now, I don’t get to anymore. The treatment I’m doing isn’t even holding the infections at bay.

So, now, with two brand new tires on our trusty little red volvo, life needs to change. Time to kick it down with the antibiotics. I need to detox every day. Crashing on the bed at 6 pm, being unable to put my 5 year old to bed? It needs to be okay. Things have to change.

So, give me tips. How do I slow it down? What do I let go off? How much of my life do I let go without losing who I am? How much do I let go without putting my kids into the “scarred and neglected” therapy program (that’s a little pompous of me, assuming they aren’t already signed up–but go with me on this one). How do I do it? What do I give up?

I sat on the table at the PT/Cranial sacral table and wondered when I will ever be able to fully use my right leg. Standing poses are mostly gone. Handstands? Gone. And now, I can’t even sit in sukasana (legs crossed). Is teaching yoga going to be the next thing to go?

You’ve all been watching me crash and burn the past 2 years. How do I keep it from getting it worse?

But Your Kids Aren’t THAT Sick, Right?

I’m losing interest in answering this question. Today, I sat at the LLMD with my kids kids. The little guy was spinning on the doc’s chair in between attempts to catapult off the chiropractic table, which I think he likely busted. His Bartonella was RAGING. She is a good sport about the Quantum Healer we are working with. The testing gave her information she couldn’t have gotten from her Western Med world. She’s worried about the Bartonella storm. So am I. She thinks the push to treat the Babs in the little guy is making the Bartonella rage. So, we need to start yet another med.

“So, you kids aren’t that sick. They don’t look that sick.” Every week? At least. It might not be a straight out comment or question. It might be more of an inference, an energy, a touch of body language. But I hear it/imagine it/see it every week.

Anyone ever hear the story of how I took the big one in to the Doctor for years asking about the HUGE lymph nodes in his neck? Dozens of doctors. Lots of lymph nodes, NEVER changing. Always ignored. Always brushed off as “helicopter mom”.

How ’bout the story about the little guy? Age 23 months, when he woke up in the am with a dry diaper. By the time we got him to the ER and the shaky chain smoking nurse tried to catheterize him, he was nearly dead. That was a scary one. They put us in an isolation room, summoned the infectious diseases doctors and quizzed us on how our son could have gotten, “Cat Scratch Fever”. They gave him a hit of IV Ceftin and he came back to life. They released him, didn’t bother to do the test for Bartonella (Cat Scratch Fever) and three years later, with no other treatment, he tested positive on that test they never bothered with. The little bit of IV Ceftin took the fear of death away, but buried the infection into his nervous system. Yeah. Thanks for that.

Let’s go over this for the naysayers. Lyme Disease can kill you. Bartonella is nearly impossible to treat. It is a serious crapshoot. No protocol. Babesia? Fucking nightmare.

Yep. Crabby today. I had my first good cry since my diagnosis. I have lovely Bartonella tears often. Manic tears, random tears. I’ve gotten them on Minocycline, on Zithromax and on several herbs. They are pretty commonplace. I get them when I watch touching movies like, “Fred Claus” (no razzing me). But today, I had my first, “Oh my God. . my kids are really sick, cry.” The kind my mother used to have behind the shower curtain. The kind that makes my kids say, “Mom were you crying?” Bartonella tears are crazy tears, frightening tears, tears my kids are de-sensitized to. These were grief tears. Today I hit places in my heart that I didn’t want to touch.

So, to say it again: My kids are sick. They can play and jump and laugh and fight. They can do Kuk Sool Won, Circus, Boychoir and go to school. And some days, they can’t do much of anything. The little guy comes out of 2 1/2 hours of pre-school ready to kill one of us. Anxiety about missing life nearly destroys the big one. Their immune system function is like that of a kids with AIDS. Not the whole immune system, but the Natural Killer Function. The little guy has tonsils that are the size of walnuts on steroids. White spots reside there. And no, they aren’t those little tonsil stones. Best as we can tell they are unmoving, unrelenting markers of Bartonella. Lovely.

When the kids get bad, the little guy gets angry and aggressive and hard to deal with. The big guy gets extremely moody, anxious and/or completely flattened.

I have tried not to become my illness, but let’s face it. Right now, in truth, it is trying to swallow us whole. One day, the little guy drew a picture of the snake that swallowed our family. That kid has amazing insight. I feel as if this disease has swallowed us whole.

I have two ill children. I watch people bake cakes and go sledding and grocery shop. I can do one thing a day, and that takes all I’ve got. Sure, everybody has their “thing”, everyone has their life challenge, but today, I’m just really sad that mine has to involve these sweet boys.

Adrenal fatigue on the big one. Big. Stress doesn’t help. Pressure from school, not so helpful. Boychoir. Fundraising. Piano lessons. Homework. None of that starts to matter when your kids blood pressure is on the floor. “He can’t be getting enough blood to the brain with that pressure,” the doctor kindly says. And I just cry.

It isn’t that I don’t want to be here. This is where I am. This is our life. This is our truth. This is the challenge we were given to help us to become more fully who we are. But one day I’d like to have the energy to do something trivial. Something meaningless. Something light and full of fluff. I’d like to take my kids sledding. Sleep a night without worrying about whether or not my son will stop breathing because those tonsils block his breath.

So, just in case you haven’t figured it out yet, I’ll answer the question again. My kids are sick. Their illness may be invisible to you but the clinical psychologist, the neuropsych docs, the pediatricians, the Lyme Doctors, the Ear, Nose and Throat specialists? None of them are ignoring me anymore. They see it now. I am no longer the helicopter mom, no longer the mom who has Munchausen by Proxy. I am the mama bear. Fighting for her cubs.

So, I dry my tears. Pick up my tired body and fight. I won’t give up. Not now. Not when the fight has just begun.

The Snake that Swallowed us Whole

Do you want to be the guardian?

Serious, here. How do you choose a guardian for your children. Family. No. Friends. Who would want two kids with Chronic Illnesses. I’m thinking about how much fun this could be. Sort of a reality TV show, “The Guardians”. Better than letting the court decide.
Should I make a list, pass it to the people on the list and ask them if they might consider it? Let them take themselves out of the running? Yeah. That is where I’ll start. I’ll figure that out in the waiting room while my husband has his appointment with the cardiologist for that chest pain. Nice.