Category Archives: Relections on Lyme Disease

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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10 Ways to Help an Overwhelmed, Exhausted Mom

I was inspired by this blog post at Nice Girl Notes.

I’ve got my own version.

TEN WAYS TO HELP AN OVERWHELMED, TOTALLY EXHAUSTED MOM, even though her situation is chronic.

Somehow, in the world of chronic illnesses, we moms (dads, kids) are supposed to be super human. In crisis, we get support. If we get better, people are happy. If we die, people bring casseroles, but chronic? That sucks. People don’t want to bring meals for years. They don’t want to do your dishes once a week FOR LIFE. But they still would (maybe) like to do SOMETHING. . but not something that makes them lose their soul in the muck of the chronically ill world.

Trust me. If you do something ONCE, it doesn’t mean you have to ever do it again. No one is keeping score, and if they are, they have too much time on their hands (and I highly doubt any mom has too much time on her hands).

Here are 10 things you can do.

1.) Send a card. Yes, an old fashioned, “Thinking of You” card. They help. Isolation is hard. Really hard.

2.) Take her kids to the park. Just call and say, “I’d like to come over and take your kid to the park.” It’s that easy. Really. Kids of chronically ill moms don’t have a blazing social calendar.

3.) Arrange a team visit. Plan a clothing exchange to help brighten her wardrobe. Plan a netflix night and sort socks while you watch something fun. Bring the gals (call ahead if she is an introvert) and remind her what it feels like to be well.

4.) Run a couple of errands. Is there anything you need at costco? My friend, who has THREE kids with congenital illnesses (not to mention the ones she and her husband have that started the ball rolling) texts me from costco. EVERY time she is there. “Need anything?” Do that. Do that when you are at Target. Or the co-op.

5.) Invite her places. Even if she says no EVERY TIME, she wants to be invited. Let her say no a million times. Some day, she might say yes. Take her out for tea, or for a pedicure. Even better? If she has a partner (well or not well) get folks to reach out to him/her as well. Much like kids with chronically ill moms, not a lot of big social events hit the calendar of people whose partners are chronically ill. So get your own partner to invite him/her for poker or band practice or tennis in the park. Isolation is the worst part of chronic illness.

6.) Ask her about her illness. If you tell her she looks great (remember, invisible illnesses don’t always make you look like crap), make sure you follow that with, “Do you feel as good as you look?” It’s an opening. My friend Ellen would always say to me, “You look great. I bet you feel like shit.” Opening. Just give her an opening. She won’t flood you with the drama. And even if she does, trust that she needs to flood. Because we look great, it doesn’t mean we feel okay. We’re good at faking it.

7.) Applaud her for her difficult life. Say it out loud. “I think you are so amazing for handling all this. You are SO strong.” Refrain from all the positive thinking talk. Avoid the. . “it will get better” talk, because, maybe it won’t. Let the present be okay.

8.) Share resources, if you can. Remember that having sick kids and being sick with little or no income is REALLY hard. If you can share your extra produce, or your farm share when you are on vacation or any bounty you might have, trust that pride and shame left the building a LONG time ago. Share. You’ll feel good. She’ll be honored.

9.) Bring Beauty.  Send over a bouquet of cut flowers from your garden. While you are there, refrain from telling her about the last infomercial you saw about how to cure her illness. She’s smart. She’s connected. She’s more connected than she wants to be. No network marketing solution needed.

10.) Offer something specific.  Instead of saying, “Let me know if there is anything I can do,” just offer something. I’ve been saying this for years, and love the reminder from Nice Girl Notes: Be Specific. Natalie Goldberg said it years ago in her books about writing. And I say it now. Be very clear and directed in your offers. I’d like to take your son to the Science Museum (or the pool or the library or ??) this thursday at noon. Would that work, or should we pick another day?”

Just because our situation is chronic doesn’t mean you are trapped in the helper role. I won’t suck you dry. I promise. I can’t say the same for other chronically ill people, but all you can do is try. Please do.

How Would I Help A Friend?

For a brief period of time, after I did a radio show with my dear friend, Ellen, I started blogging about how to support chronically ill people.  Ellen and I both dreamed of a world where support came easier and more often.  I held Ellen’s hand through the final days of her life, and want so much for the dreams and wishes to come true.  That when an illness becomes chronic, community STAYS.  Doesn’t run, doesn’t ignore, doesn’t avoid.  That’s what I still want.

 

So, I’m going to post those blog posts here over the next week or two.

I hope they help one person gain the courage to reach out.

Originally posted February 5, 2011

I was told yesterday, by an amazing, yet chronically ill writer friend that I had amazing ideas.  It made me smile.  I just wish I had the well body to make them happen.

I’m hanging from a very thin thread today.  I worked my emergency plan by sending out an email to my Lotsa Helping Hands site.  Asking for people to give up part of their weekend to sit with me.  Be with me.  Keep me from eating my young and screaming at my partner.  And I have some people coming over.  I’m very grateful.

If I were the well friend, instead of the friend in need though, this is what I would do.  I would call that friend, or email and ask if we could set up a potluck/movie night/clothing exchange/salon/eveing of drinking games at her house, to help her get through this time.

Help her feel support.  Feel like she has a team behind her, not just a bunch of disparate friends that steal time from their active lives to babysit the crazy woman.  Not that that situation is bad, I just want more of the whole “Thirty Something,” or some sitcom I can’t remember well enough to reference.  The friend is in need, and the group of moms/friends/neighbors lend a hand.

I was at the house of a friend, today, whose husband struggles with Chronic Depression.  She told me that a friend had arranged a group cleaning session.  Grabbed a couple of moms and had a window cleaning party.  Good old fashion barn raising.

That’s what I would do.  I would arrange something that gets her social.  Helps her feel supported.  And maybe even gets some work done for her.

Sure, it might be exhausting, but most chronically ill people are pretty darn lonely and would welcome the change to have people over.  Just don’t leave a mess.  : ) 

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.

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.