Category Archives: Friendships/Friendshifts

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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

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.  : ) 

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.

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.

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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