Category Archives: financial burdens of lyme disease

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All that I could be blogging about. . . a year end review

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Life is full.  Very full. I could be blogging about tonsils, possible surgery, the search for alternatives. I could be blogging about treating with photons, with nosodes of lyme, blood, urine, saliva and candida. I could be blogging about the … Continue reading

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.

 

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.

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.

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.

When I Get Well, I’m . . .

When I get well, I’m going to sew again. Curtains, bags, big heavy fabrics, things cut on the bias, things with mismatched patterns and textures. I’m going to make jewelry. And write. My brain will work so well, that I’ll be able to harness the ideas that I have and make them sing out into the world.

I’m going to go out to hear bands. Like The Dentists and The New Standards. I’m going to go out for dinner at places where I don’t need to worry about how stinky the clientele might be with their party clothes and their perfume.

Oh. Parties. I think the last party I went to was when my baby was still a baby. I wore him on my back, or in a sling. And he slept from the overwhelm.

When I get well, I will take my kids to park classes and swimming lessons and tae kwon do. I will go on vacations and have kids over to play and he will be invited to playdates and birthday parties and people will expect us.

I will go to church at whatever time I want. Sit where I want. Talk to people when I want, even if they were a little heavy handed on the scent before they left the house.

I will go to the Holland Neighborhood Hotdish Event. Because I’ve missed it the last 3 years. Because I love it. Because I miss my community. Because I’ve gone invisible. And I’ll wear my handmade bags on my shoulder. My strong, working shoulder. I will even carry a hardcover book by Joyce Carol Oates in the bag. Because I’m strong. And I can.

I’ll go back to yoga and pay attention to how much my fascia is damaged, rather than trying to override it and make it do the poses the way they are supposed to be done. I will kick to handstand. And do a backbend. I will.

And I will teach. Oh, how I will teach. I’ll have salons for teenagers about sex. Yoga for boys with lose joints. Psychic Development classes. Energy Work classes. I will develop programs and build community and support chronically ill artists. And I will teach dark, dark, dark fiction. Because it is in the dark that we find the strength of the light.

I will volunteer at KFAI. I’ll even clean the bathrooms. I don’t care. I just want to be there, watching radio be made. Radio without Boundaries.

I want to be tagged in a photo on facebook because I’ve been spotted in the world. It’s been about 2 years now. Maybe longer.

I intend to ride a bike, or maybe a trike. And buy some new clothes. And live on the edge and wear sandals instead of my orthopedic inserts.

I will make theater. Not only about Lyme, but about other things. I will audition to be in the 10 minute play festival at Bedlam Theatre. I will apply for grants and make art and sing (metaphorically) in the world.

My friendships will thrive. Even the ones that have fallen away due to judgment or neglect or misunderstanding or bad feelings.

I will someday believe in a higher power of some sort. One that holds ME up, not just the other people in the world who are more deserving. That lie will vanish and I will feel supported.

I will one day be able to pay forward all of the emotional/physical/financial gifts our family has received in the past three years.

I will live to see my children graduation high school, and college and find partners and most importantly, GET WELL. Because I know that they can.

My trees will be cut down, and new ones replaced. My perennial garden, that is tended very little, will be flourishing, and I will remember the tears I shed when other people needed to do my weeding and splitting and planting. And I will grow brussel sprouts. And have chickens.

Some day, I will feel good. Well. And I will be in a place of contentment. I will have days where there is nothing to heal, nothing to fix, and nothing I need to figure out.

I want that day to be today. It isn’t. But maybe it will be tomorrow. I just hold the hope.

She’s. . . . ALONE!

My mom never went to appointments by herself. Except for little things, like a check up. I made sure of that. She was never alone. She often got concerned that she was taking up too much of my time. She never wanted to put anyone out. She even figured out how to take a cab to her radiation treatments, just in case I couldn’t help. But it never happened. And she never wanted to be alone.

Really. I wouldn’t have given up a single one of those appointments. The waiting. The little kid of mine sitting and reading books in the lobby while we waited for her oncologist. Not a single visit gave me a single regret.

We used to watch the women coming in alone, and leaving alone. She would always tell me, in her big girl voice, “See, I could do that.” But every time, she would tell me how glad she was that I could drive her, be with her, care for her.

“Nobody should have to go by themselves.” I hung on to that idea with all the fierce intensity that I could muster. It made me so sad, I wanted to get the phone numbers of all the people who were arriving alone and pick them up for their next session.

I sat through radiation for her and 12 years before, I sat through chemo and radiation with dad. A few years before the cancer, I nearly carried her to the clinic, dehydrated and very, very ill from an intestinal parasite that was trying to kill her. I dragged her to the doctor. Because no one should have to be sick alone.

Tomorrow morning, I ride the city bus to the hospital for an MRI. I’ve only had an open sided MRI, and we need a better picture, to help all the puzzled practitioners figure out what the hell is going on in my shoulder and my neck. I’ll be taking a tranquilizer on the bus, and another when I arrive.

Wow. That should knock me out.

I will arrive alone. I will have the test alone. I will wait until my husband picks me up. He isn’t the most timely of folks, and he will have my 6 year old with him, and be rushing to work shortly afterwards, so after the procedure, I will likely be alone.

It’s so weighted, this word, “alone”. My single friends remark at how lucky I am to have children and a husband. I am. Even though my kids and husband are all sick, I still have them. I am lucky. I am blessed. And, at the MRI, I am still alone.

What would someone sitting there do for me? I’ll be drugged. So, likely not feeling claustrophobic. The last MRI I took the bus to and from. It’s not being alone that gets me. It’s the idea that I don’t have anyone to sit with me like I sat with my mom. There is no one to hold my hand like my mother would. There isn’t anyone to be there.

I am so lucky that Lyme is not an illness that lands me in the emergency room very often. The last time that happened, my bp was seriously low and the doc told me to go to the ER. I took the bus. 2 buses in fact. And, people do this alone every day.

I’ve always heard the saying, “What goes around, comes around,” thinking that all the care, concern, and being-right-there-ness that I have always had for others would mean that I wouldn’t be alone, in a waiting room. But I’m learning the world doesn’t operate the way I believed it did. I don’t want it to mean that I am not loved. I know that isn’t true.

I just never thought I’d be alone.