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.

FEVER. BITCH. SHAKE. CRY. FEVER. PAIN. REPEAT.

In three years of treating my multiple infectious diseases, I haven’t spend much time with treatments to target babesiosis. Maybe because it’s an elusive illness — one that most doctors say, “You don’t say. . .” when I tell them I have it. Babesiosis is one the “rare” illnesses. Or so they say. They are now screening our blood supply for it, because it’s appearing there so often. But the standard medical folks call it rare. I call it evil. Nasty. Wicked. And those are just the PG-13 acceptable words.

The babesiosis life cycle is fascinating. In this image, they say that humans are a dead-end host. Oh, how my children wish that were true. Not true. Oh, and people rarely think of ticks being in the city, but every time I see a mouse, I know they aren’t far behind. Wikipedia’s image proves that. But I digress.

One of my Lyme friendly doctors told me that depression is the greatest psychiatric symptom from Babesia, and since I’m usually more of an anxiety gal than a depression gal (same thing, yes I know), and my depression has been increasing, he made me promise I’d start taking these meds.

Despite my resistance, I’m doing it. And I’m increasing the strength of the treatment as tolerated. But today, many weeks into the treatment, I am faced with the mother of all babesia herxes. Much like a complex dance sequence, this was my day: FEVER. BITCH. SHAKE. CRY. FEVER. PAIN. REPEAT. Yep. The fever is my favorite. Gives me a preview into hot flashes, which are right around the corner. I’m sure the bitch part is nobody’s favorite.

But I keep plugging on. FEVER. BITCH. SHAKE. CRY. FEVER. PAIN. REPEAT. Hopefully tomorrow will be a different combination.

Persistent vs. Chronic

I don’t like the word, “chronic” applied to my daily struggle. It sucks the hope right out of me. I don’t want to be chronically ill. Years ago, when I was around a whole lot of people doing spiritual work, a woman told me that she always wrote, “Healing,” when a form or an application asked for current employment or position.

I am healing. I am healing from persistent infections that have taken me down over the past 27 or so years. I am healing from persistent infections that very few people are researching a cure for. I have treated for a considerable amount of time, and yes, all of these infections are so incredibly persistent. Some days, I feel better, but overall, I don’t often feel like I’m winning my fight.

I want to be one of those people in the 10% that are on their way to beating or have beaten this illness. I don’t want to be in the 90% that appear to be chronic.

So, how do I go from one group to the other? Attitude is everything, or so “they” say. I think they are wrong. I think the recipe is 1 part attitude, 3 parts passion for life, 5 parts finding the right doctor or practitioner to guide your journey. Throw in thousands of dollars to be able to treat. Add a little luck for the right social security attorney and judge. Extra bonus for an organization like Pathways. Then subtract the number of people in your family infected, after you multiply that number by 10. Finally, take the number of great friends and family (and in my case my current and former student family) that stick by you through everything and multiply that with enormous love.

That’s where you get your answer. And that answer can only be hope.

That’s the recipe that I believe to be true. I’m missing a few things, so I have to keep making shifts. I move things around and do what I can to solve the equation.

It’s persistent. And difficult. But I need to hold on to hope.

Everything is Coming to a Grinding Halt

Remember that song?

I got a comment that made me pause. In fact, it brought me to a grinding halt. I was forced to remember what my values have always been.

The comment was really hard for me to read. The author of the comment was clearly someone that knows me, has helped me frequently and feels used because our relationship isn’t a two-way street.

I stopped blogging. I got swallowed by shame. I wanted to know who it was, and how I could make it up to them and I felt like a selfish pig. I thought I needed to stop asking for help completely. I was trying to convince myself that I don’t have needs.

But I didn’t quit blogging. I didn’t let myself fall into a deep despair because I don’t have the energy for that. If can’t even walk up a flight of stairs because my heart is not operating correctly, I can’t let myself be pulled down by someone’s belief that somehow I am not enough or that I don’t do the relationship correctly.

Good deeds can never be reciprocal. They are circular in nature. You are always paying it forward in life. I set up a soup train for a family dealing with depression. Kitty and Fun came over and spent the whole day cooking prepared meals.

I had lost my appetite and stopped eating. Their love and good food filled me up and made me want to eat again. I set up an auction for a friend who needed financial help. She can now afford to continue treatment. I give. You give. We just don’t always need to give in a “two way street” pattern.

I’m sad that a “friend” wouldn’t come to me and tell me I was neglecting her, and that she was offended by my “all me, all the time” energy of my blog.

Hmmm. . .what’s a blog for? It’s about me. My story. My experience. My needs. I am so grateful that I am strong enough to ask for help. When I ask people for help on any level, I believe that I am full of gratitude. When my friend Carrie comes over to help, I ask about her husband and daughter and her work and her dog. I don’t always call and check in with her (well, there is that issue that I HATE the phone), and I don’t always email her to ask her about her teaching.

I try SO hard when people visit to make it about her/him just as much as it is me. I try to make sure it is about community, not about me, me, me. I’m not in the world every day to see people. I’m caught up in my own life. And it is full.

And I have very limited energy. I am in a constant push/pull against what I want to accomplish on a daily business. I have shoulders that can’t get to 90 degrees. I can’t unload my dishwasher or dress myself. Sometimes I can’t take care of my sick children, and no amount of money in the world will give me healthy children or a husband that is well. This is my life. It isn’t bigger or better or hard than yours. The events and needs in my life don’t matter more than my neighbor’s life. My difficulties do not trump the young woman on the East Coast, a dancer since the age of 3, who just gained the ability to walk this week after two years of not being able to. I am not better off nor am I worse off. There is no hierarchy of pain, grief, despair, illness. There isn’t. Your brain tumor is not more valuable than the stage 4 Ovarian cancer. A job loss or longtime unemployment is not more or less difficult for you than anything anyone else is going through. Different. Just different. And hard. All hard.

No matter what our struggle, we need to maintain the courage to ask for help. It’s been a very difficult life experience for me to be so vulnerable. But I encourage everyone in need to try it on for size.

When you hurt, tell people. When you need, ask. You can’t worry about the outcome, even if your friends start feeling used and hurt. If you are feeling used and hurt you can step forward in courage and talk to your friend. Holler, “I NEED YOU.” Be honest.

Every time YOU ask, every time I ask, every time YOU help, every time I help, We send that strength and courage into the world.

What’s my alternative to asking? I can’t do this alone. None of us can through our troubles alone, and if we try to, we will just end up feeling hurt and lonely.

I have been grateful for every single person who has donated time, energy, love, or money to our family. Every dollar. Every moment. I may not express my gratitude as much as people would like. I may not return it in an equal value, but I’m doing the best I can. Just doing the best I can.

I’m back to blogging. No more music by The Cure as my daily theme song.
Because out of my “All me, all the time,” blog, I know I’ve touched the lives of people that live in overwhelm and Moms that live in fear for the lives of their kids. I know it. And I’ve saved at least one life.

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.

Feisty Sister Fund Project

Having Lyme & MCS sucks. No matter what your situation, you are likely spending at least 80% of your available dollars on medicine and treatment. And. . there is never enough.

When something happens in our lives, our sad budget situation gets even worse. It’s the way it is.

So, friends need to step up and help each other, which is what a few of us have done. This is not a glamorously funded organization. Most times, we can’t even pull together a fully functional brain from the lot of us. But what we lack in heathy brains and bodies, we make up in love.

Two links to visit, today. The Feisty Sister Fund. Feel free to offer your functioning brain to help us. WE could use it.  We aren’t savvy enough to be anywhere other than facebook and the auction.  Bear with us.  It is important.

And our current auction, to help Heather,  a beautiful activist, friend, musician, poet, love.

Rubik’s Cube, Revisited

I know one person who has lyme that is well. ONE. And I only know her virtually. She has saved my life on more than one occasion. And my marriage. She lived in hell, like the rest of us, but now she has clarity. She KNOWS that all this ‘fighting for our lives’ business is worth it. Good thing, because most of the time there is nothing in my life to make me believe that. So, I need to trust her.

But, why is she well? And how does one person being well give me hope, when there are thousands who are not, many who have died this year alone, and kids being born to moms with un-diagnosed lyme every day?

Because if one person figured out treatment for her particular form of this insipid disease, then more of us can. It is like a Rubik’s cube. My friend Leland can do one in no-time-flat. Me? Not so much. My son works it with the instruction booklet. Try one twist to the right. One to the left. Get ahead. Step backward. Get boxed into a dark alley by Bartonella. Waltz around with Babesia. Try another herb, another antibiotic. Add another layer, try another probiotic. What about frequency therapy? Sauna? How about light therapy? Diet? Raw Foods?

Yep. If I know 200 people with CHRONIC LYME disease, there are 200 different rubiks cubes to solve. When I used this analogy, my kid with serious cognitive trouble glares at me. “But MOM! I can’t solve the Rubik’s Cube!” Nope. Neither can I. That’s why we have Anne coming over with Freddy to help us on Wednesday. Carrie in the afternoon. Dr. P. sees me on Wednesday. Isabelle is going to sew some casings and hems to get some curtains on our windows, finally. That frees up the little energy I have to make appointments for the acupuncturist, check in with the frequency therapist, administer coffee enemas, the coconut oil, the homeopathics. We just keep twisting until we find something that feels like it is working.

Too many cooks spoil the soup? Is it like a big wapatooie party where everyone throws the liquor in the Kool-Aid and everyone gets loaded? Kind of feels that way. . but it isn’t. We have to find the right combination because there is no protocol that works for everybody. Nothing like a life threatening illness to make you learn to trust yourself. Nothing quite like it.

Now, back to the rubik’s cube.

Compassion Fatigue vs. Unconditional Friendship

This is a repost of an earlier entry.  Feeling abandoned by friends is a feeling that ebbs and flows.  I am NOT in this place right now in any way.  Nothing has changed with the old friends, but I have cultivated a new, more stable support system.  I’m posting this again, for those of you that are struggling with this right now.

Please join in a conversation via the comments and share liberally.  These conversations are just as important for Lyme Disease Awareness as details about how to remove a tick.

This is more of an inquiry than a post. And trust me, if you are reading this post, it is unlikely that I am talking about you. Really. Unfortunately, this inquiry will NOT be viewed by the people I most want to see it. I want to speak to the people who have dumped me, cut me off, let me go, but they aren’t here reading my blog. They aren’t the ones who will be willing to answer, because they have vanished.

I had a dear friend tell me that she had taken a break from me after my diagnosis because I was “all-Lyme, all the time”. It made me realize how easy it is for me to drive people away without intending to. But, at the same time, I struggle with the meaning of friendship. It makes me wonder why we, in this culture, think it is necessary to take breaks from friends when they most need us. I can’t take a vacation from Lyme Disease, even though you can take a vacation from me. I can’t pretend that my kids aren’t sick. I have to live out loud. If that is uncomfortable for you, I really do want to know why. I have no intention of changing it, but I do want to know.

Struggling with a life threatening illness, one that you now share with your husband and your children is not easy. There is no cure. There is no protocol. In order to make progress, we need to be continuously aware of our diets, our environment, our treatments, our exercise, our stress levels. That would consume the healthiest of people. Yes, 17 months down the line, I have a better container around our illnesses, but frankly, it is still Lyme, most the time.

I want to be brave. I want to yell to those friends who have left me: “TELL ME WHY YOU HAVEN’T EMAILED ME IN 11 MONTHS?” or any number of questions.

I want to know what the challenges are to reaching out to a sick friend. Theorizing alone is no fun, so I’d like to invite my readers to weigh in on this.

Why do friends let people with chronic illnesses suffer alone?

If you sigh every time one of your friends emails you about their illness, posts something on Facebook about their illness or invites you to events surrounding their illness, why? What is underneath that sigh? Is it regret? Is it fear? Do you roll your eyes, wishing they could just go on with their lives? Do you want them to “cut the drama” and go have a beer? There will be no judgment for your honest answers. Just share them. Use an alias. I’ll take my restrictions off for comments so they can be private for this post! Share for me. Share for my readers, many who struggle with invisible illnesses as well.

How can we, as “friends” offer help to someone who is consumed by their illness when what we really want to do is just click “delete” or “hide” when we see their name in our inbox or on our newsfeed?  I can assure you, they are more overwhelmed by their illness than you are.

Is running away, cutting them off, making excuses the best way? For you? For them?

And to those of you who have the strength, the courage and the willingness to stand by the side of your friends with chronic illness, why do you do it? What draws you to support when others are repelled?

What sustains me in this illness is my Faith in people (which is sometimes flimsy, at best), Trust in friendship, and having companions on this Journey. I have no understanding around conditional friendship. Maybe you can teach me.

As my mother used to say, “If you can’t stand the heat, get out of the kitchen.” To all the beautiful friends of people with chronic illness who refuse to leave the kitchen, many thanks.

Life in a Centrifuge

Yesterday was a big day in many ways. It was the last official class for the Middle School Creative Writing class and they are ready for their show on Sunday. That’s a relief. Then I did a whole lot of medical records requests/communication that I’ve been dreading. Then date night, which is a weekly ritual, best as we can. And yesterday, I had nearly 200 hits on my Forgiveness blog post. I was aware of the existence of the sweet morsels life has to offer.

A few minutes into date night, I started experiencing pain like I had never experienced in my wrist and arm. Nerve pain, bone pain, joint pain. Ouch. I got hubby to lift it from my lap to the table and put it on ice. I couldn’t lift it by itself. And then, I remembered.

Not only is this what I experienced when my right shoulder started to freeze, but in 2006, I went to a same day appointment, with little baby in my other arm, with my big kid pulled out of school to help. My wrist/arm felt like it had been broken. Swollen, nerve pain, the whole bag.

One of the hardest things (and possibly the most self-preserving of all things) about my illness is my terrible memory. When things are bad, I’m present, I am aware. When things are okay, I forget the bad. It’s like the burning pain of childbearing. Most mothers are ready to do it all over again, forgetting how intense the pain and discomfort was. It’s the intermittent nature of this illness that makes Social Security disability, disability parking and overall awareness of an invisible illness elusive.

I sometimes feel like I’m in a centrifuge. Sometimes alone, sometimes with other people who share my illness. It turns off, it turns on, I try to right myself, and sometimes it takes forever for the spinning to stop and get back to ground zero.

I’m on a journey I never consciously chose. But I’m here. Better to be aware and awake and alive in it than to die asleep.

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.