Tag Archives: fibromyalgia or lyme

Good Press, Bad Press?

I appreciate the frequency with which the NY Times has been covering Lyme Disease, but I wish that would do some more fact checking.

I love the tone of this blog post, written by Hope Reeves. — Yes! Take this seriously. But there’s so information missing that is critical if you want to keep your family safe, and to make sure those who get infected don’t have life long damage from these illnesses. Remember, I was undertreated. I passed lyme to my kids. My serious health issues didn’t debilitate me for 20 years. Know the facts and the theories if you or your family members get the “flu” this summer.

TREATMENT: It horrifies me when all the press that’s coming out this year talks about antibiotics treatment for 2 – 4 weeks for an adult or child. What kind of untrained doctor are these people seeing? Even my family practice doctor treats for a minimum of 6 weeks. Most docs who have any education at all in Lyme Disease will treat for 2 months past the last symptoms. TWO MONTHS.

RASHES: And, the whole rash issue just chaps my ass (pun intended). There are so few rashes. I had a rash that was diagnosed as an allergy to the nickel in my jeans. In 1986, it was a dermatological issue. Even though it was a bullseye.

LOCATION: The focus on the Northeast as primary might make people in other parts of the county feel like they are safe. Not true. I know whole families getting tick bites in Northern California, Florida and all of the country (and beyond).

TRANSMISSION TIME: We focus on Lyme, but we don’t know the transmission time for other tick borne illnesses, and if you are one of the few people these days who gets LYME only from a dirty tick, you should start playing the lottery, because it is VERY rare to have just that illness. And the most traditional doctors admit that Babesiosis needs at LEAST 6 weeks of treatment.

DEER aren’t the only ones to blame: We have to stop blaming the deer. Two of the most common transportation methods for deer ticks? Not the deer but birds and the white footed mouse. And we need more research into mosquitos as vectors. My son had a Bartonella re-infection that was thought to be from a mosquito. And let me remind you, you don’t want your kids to get Bartonella.

So, no matter where you live, even in an urban apartment, if you get ANY flu like symptoms in the summer, just assume it’s a tick borne illness and find a doctor that will treat you properly. Don’t trust that your family doctor has the education YOU need.

I hope the NY Times Motherlode blog and other high profile mama bloggers do some deeper digging so we can protect all kids better.

 

 

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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.

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.

*********************

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.

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.

Does Everybody have it?

I know that I live in Minnesota, but how can it be that damn near everyone I know has their own Lyme story?  My son’s best friend’s father.  4 weeks of anti-biotics.  Same for my brother-in-law.

My husband’s aunt has fibromyalgia that she always suspected was Lyme.  My writing sister with “arthritis” has always thought it was Lyme.

And now, I get an email from a regular reader of another blog I write tells me, through her cortisone shots and joint pains, that she, too suspects Lyme.

I’m sick of the drama.  Sick of the controversy.  And I’m so lucky I have a doctor that gets it.  Gratitude, baby.  That’s what I’ve got.

Test results today:  CD-57 is 72.  Not low normal at 200.  Not 8 or 14, or 23, but 72.  Not bad for chronic Lyme.