Category Archives: Family Relationships

What the hell is PANDAS and how do I get my kid tested/treated?

The search for PANDAS information is harder than the search for Congenital Lyme data. It isn’t a cute little bear, I can tell you that. It’s more than that. The folks at my local university medical hospital work to discredit the research that is out there. My primary doc that works with my little guy had never heard of PANDAS, and yet, it was Finn’s therapist who has been pushing us for a complete evaluation. Seriously? I need another controversial, hard-to-diagnose, hard-to-treat disease in my kids body as much as I need another one in my own.

Today, I mentioned the disease which is known as Pediatric Autoimmune Neuropsychiatric Disorder and is believed to occur after strep, to my neurologist. He said, “Oh, that’s a bad one. It’s controversial and difficult to treat. I hope it isn’t that.” But that’s all I’ve heard. I have a suspicion that there’s a connection between bartonella and PANDAS. My little guy’s OCD was most intense AFTER he had limited treatment for Bartonella and it got better with many months of zith. But it appears to be back. His last fever/vomit/sick nightmare, around his birthday in October set something off. A new infection? A reinfection? An immaculate conception? I never know. I don’t even want to know, really.

I’ve called a lot of doctors about seeing my guy and so far no one seems particularly interested in him. But today, I called a doc in Iowa who, with a referral from a primary doc, will see him. It is POSSIBLE that our insurance will cover the visit, but if not, it will be something do-able. Or credit card-able.

PANDAS. Who is out there blogging about PANDAS? I need to learn more.

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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.

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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Things My Mother Tried To Teach Me

Ten years ago on Mother’s Day, I leaned over to my mother and said, “Happy Mother’s Day, Mama.” She replied, “Shit. I don’t want to die on Mother’s Day.” As if that would matter. Mother’s Day hasn’t been easy since that day. I want to celebrate being a mother and I want to celebrate my children, but having my mother as my mother was such a gift. It’s hard to see this day as anything other than her day. So, in honor of my lovely mother, I am going to post 20 things my mother tried to teach me. Some I learned, some I resisted, some where outright lies.

But she tried. And I love her, still.

1.) Horizontal stripes make you look fat. Vertical stripes make you look slim and tall.

She had this vertically striped dress that was so hideous though. What I wouldn’t give to be able to remind her of that fashion error. So, I’ll say, “Stripes are hideous, Mama,” and leave it at that.

And part two: Always wear patterns. We are a messy lot. You can hide the stains that way.

2.) The Supernatural does exist.

Sometimes, even in a church basement. I love that my mother was a charismatic catholic. I think that is why I love supernatural fiction and urban fantasy. Thanks, mom.

3.) Never speak in public. It’s scary. Could even be life threatening.

My parents were horrified when I joined the speech team in high school. Later, when I coached the team and she was dying (and I was sneaking off from her bedside to still coach a little bit), she wanted to make me buttons to give to the team. SPEECH SAVES LIVES. She believed that speech saved mine.

4.) Never leave the house without lipstick.

Ever

And always carry tissues. Sorry mama, I still haven’t mastered that one. My kids still use their sleeves. Or mine.

5.) Never pass by a restroom without trying to use it. You never know when you will find another one.

Believe me, she followed this one to the letter. Ask anyone. You just never know.

6.) Never leave a pan handle sticking out from the stove. It’s dangerous.

Cooking with an illness induced brain injury isn’t safe either, Mama. Just sayin’.

7.) Never lick a knife.

Not even a table knife. I live on the edge. I let my children lick knives. Even when they are taking blood thinners. It takes particular skill to cut your tongue with a table knife.

8.) God exists. Even if it feels like God has abandoned you, God likely hasn’t.

Yeah, mom. Not buying it.

and part two: It isn’t where you find God, it’s that you find God.

Okay. I’ll buy this one. If I find God in music and in children and in every breath I take that doesn’t cause pain, score one for you.

9.) Never put important things on high shelves.

Thanks, mom. I haven’t mastered this yet, but I need to, since I have one fully frozen shoulder, and one on its way. This never mattered to me when I was well. I was 5′ 8″ to your 5’4″ then, but now, you are right.

10.) There’s safety in numbers.

She didn’t like the idea of settling down with just one love interest. At least not for her children that were in high school. I kept telling her, “Mom, if I have four boyfriends, I look like a slut.” But she was right. It kept me out of trouble.

11.) My husband and son were the most amazing gifts in my life.

Again. Right. They drive me crazy, but she was right.

12.) That my father would have been proud of me.

I don’t know, Mom. It’s easy to make shit up after people are dead.

13.) That I needed to be a writer. I was born to be a writer. And a hospice nurse.

Okay mom. How about a chronically ill writer? Is that a compromise, because it seems a little like a cruel joke. But I guess you knew. Somehow, I would end up tying together sickness/dying with writing.

14.) Be fair. Don’t play favorites.

You weren’t very good at this mom. And you know it.

15.) Perms give you a sense of security no matter how bad they are for your health and well being.

You were so wrong on this one, Mom. Wrong. Wrong. Wrong. The last few years of your life, you looked great. I know you went perm free because of me, and for your health, but you looked great!

16.) Coffee enemas are wrong. Just very, very wrong.

Again, mom. Coffee enemas are the bomb. I can’t believe you wouldn’t go for it. “I’d rather die than do coffee enemas.” Yep.

17.) Don’t play with matches. Because my sister did and lit her dress on fire.

Thank you, Barb, for lighting your dress on fire. I would have learned the hard way. I did put a fork in an outlet in 4th grade. Wish you would have warned me.

18.) God has a plan for your life.

Again, really? To be 46 years old, have a mitre valve problem, and who knows what else going wacky in my heart. In addition, I’ve been carrying around a variety of infectious disease for a really long time. Not buying it, mom. God’s plan seems a little mean if you ask me.

19.) Don’t ever have a difficult conversation with someone after dark. Just let it wait until the morning. Then everybody can sleep.

Yes, mom. Brilliant. I wish I remember that more often.

20.) Stick by the people you love, NO MATTER WHAT. Even when you die, never leave them.
Yep. Your were right mom. This is the one that impacted me the most. You will never forget me. You will not leave me orphaned. You will never forget your own.

Happy Mother’s Day, Mama. I wish you were here. We could fight about the perms, Jesus, coffee enemas, and knife licking. And I would savor every word.

Thanks For The Wheels, Mama!

In 2001 when my mom was dying of cancer of the pancreas, my brother decided to buy a wheelchair for her instead of rent one. “Someone will need it someday,” he insisted. I didn’t get the point, she she was dying from the moment they found the cancer. But we went on many walks around the neighborhood looking for robins and buds and enjoying the sunshine, together.

Even while I was getting the hang of operating it, she still had her sense of humor. I wheeled her forward over the lips and curbs, instead of backwards.

“Are you trying to kill me?”
“Nope, just trying to add a little excitement to your day.”

Seriously. . you can really lurch someone forward with those things. Today, I know that from experience. And children should not be allowed to operate them. Unless they really do want to kill you.

Although his appearance may fill you with fear, it was my husband who did the most damage.

“We are going to have to remodel, honey,” my husband said as he banged into every corner–from the couch I have become one with–to the bathroom that is smaller than a trash can.

I don’t want to remodel. Nor do I want to need a wheelchair. This treatment makes my joints lock, hurt and swell. I keep blacking out when I try to stand and even if I could, I don’t have the breath capacity to make it across the house. But it’s hella better than the firefighter’s carry. Yeah. That wasn’t working at all. I weigh more than he does, and frankly, he isn’t as strong as he thinks he is.

I never thought I’d really need a wheelchair. If I skip my meds tonight, I might not even need it tomorrow. Such is the nature of lyme disease. If I keep a sense of humor about it. . it’s okay. It gets me to and fro. Those missing pieces of plaster on the edges of the walls and doors? Someday, we’ll tell these stories and laugh.

And No, It isn’t Munchausen Syndrome

I went to Physical therapy for a total of 64 sessions at one clinic and about 15 at another over the past year. My locked hip thawed, and my left hip developed an impingement. My Right shoulder started to freeze, then fully froze and now my left shoulder has an impingement. I’ve been told many things while I have had this shoulder problem.

“She appears to be a malingerer,” says the very young PT whose notes read more like the notes of a psychic than a health care practitioner.

“Her arm appears to be fine,” says the Psychiatrist who interviewed me while I had my hands in my lap. This was the same psychiatrist who told me that I was obsessed with a fictional disease that I didn’t have. (Note to the doctor that I named, “The Dragon Lady,” no one can actually have a fictional disease.”

“Her pain doesn’t follow the typical course,” from my functional capacity test.

Well today, a little too late, I was vindicated. Yay! This amazing Surgeon said that surgery for frozen shoulders are common place and yet there is no evidence that the surgery does any good. And he isn’t going to cut into my shoulder.

Because I have repeatedly “Refused steroids,” I am considered by many, a patient that doesn’t want to get well. But here, this famous surgeon was saying, it’s too late for steroids. And, if the left shoulder begins to freeze, we could do injections of steroids, but they would only last 2 months and with the auto immune component, he wouldn’t do it unless my primary doc agreed, and she won’t.


Apparently, there are a few things that I have going against me with this whole frozen shoulder thing.

1.) I am a woman approaching menopause (theoretical hormonal causality).
2.) I am fair haired, light complexion (theoretical hereditary causality).
3.) I have what the surgeon called a “hyper auto immune issue” that means there is really nothing that can be done to speed up the healing and physical therapy is the WRONG approach.

I’ve heard from other therapists that those who do the best with frozen shoulders don’t have auto immune crap going on.

My question is, “What is my auto-immune crap?” It doesn’t appear on any labs, really. Not any common ones. You have to dig into a specialized test at a specialized lab in order to see my auto immune condition. But it is there.

Not for one moment did he add Munchausen Syndrome to my list of challenges. Nor did he say, “Somatization disorder” is possible.

But today, none of that matters, because THIS doctor did me a great service. He told me that the fact that my peronius longus muscle in my left leg hurts every time my OT or bodyworker manipulates the trigger points in my right bicep, doesn’t make me crazy, nor does it mean that I’m faking it.

He told me that It doesn’t matter that my pain doesn’t make sense. I’m wired differently, that’s all. The man gave me no options and no solutions during our visit, but he didn’t treat me like an anomaly. He recommended I learn some baseball/shoulder stretch, and I’m meeting with his PT asap to learn those. It’s funny, he gave very clear instructions to the therapist. “Conservative Protocols: 4-corner stretch; reverse Codman’s; ceiling punch; No passive motion/stretching.” And a final note: “Be gentle.”

He treated me like I mattered. That my pain mattered. That my illness is causing my pain. And he admitted that he likely can’t help me. And that he can’t stop the left shoulder from freezing. Still, I walked out of there knowing that I’m okay. Despite my illness trying to tell me otherwise.

That, my friends, is a fine Doctor.

What Does it Mean to show up for a screening of Under Our Skin?

Tonight, there was a showing of the Award winning Film at my local Movie night. The fabulous woman who runs “movie night” wanted to show this to honor my family and our struggle, but she did so much more than that.

This is the night that many restaurants in my city participate in Dine Out For Life! By eating out at your favorite establishments, a portion of your meal price is donated to this organization. The restaurant my husband works at was donating to The Aliveness Project. Fabulous organization. Fabulous cause.

In his book, Healing Lyme Disease Naturally, Wolf Storl compares what’s going on with Lyme Disease with what happened in the 80’s with AIDS.

I look forward to the day that Lyme Disease, and all the wicked co-infections and opportunistic infections that find their way into our already sick bodies can be as visible, as supported and as understood as AIDS/HIV.

I’m not saying I want LESS support to go to AIDS/HIV. Look at all that has been done in the past 20+ years! I just want, for my kids’ sake, to have the light shine on the fastest growing infection in the world. I can’t wait for twenty years.

My son saw the film for the first time, tonight. He looked at me with pain in his eyes when the little boy says something about just wanting to be normal. I just want my kid’s illnesses to start being understood. AIDS awareness and support grew one moment at a time. And Lyme awareness grows one moment at a time as well.

A showing here, an article there. It doesn’t move fast because so many of us have the desire, but not the energy, the want, but not the will. This disease has robbed us of so much, so it becomes the friends and the neighbors and the people in charge of the Movie Nights that keep it going.

From the bottom of my heart, I thank you, Eastside Co-op, for advancing Lyme Disease Awareness. And thank you to the people at the showing for just showing up. Even if you attended because you were curious, or because you knew someone with lyme, I believe you were there for me. And my family.

Lyme Disease: It’s bigger than the warning on the bug spray can.