Super Freak. Super Freak.

I’ve made a decision to be that mom.  You know.  The one with the hand sanitizer in her mag-lite holder on her belt.  The mom who opens the automatic doors with her elbow, flushes the toilet with her foot and uses the paper towel from the trip to the bathroom to push the elevator button.

Yes.  That is I.  I am her.  And for the next year, I am committed to boosting my little guy’s immune system like never before.

Today I even said, “We aren’t freaks, we have wacky immune systems.”  That works.

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.  : ) 

It’s been a long time, been a long time. . .

I haven’t blogged for awhile. Well, it’s been more than awhile. Life has been full. Full of joy, full of sorrow, full of tasks and musings. Mostly, I don’t want to talk about my life, slogging from one infectious disease to another. One goes high, then others go low and it feels like we are on a fulcrum, participating in some strange high school science experiment.

We’ve been treating with the PE-1, or the Photon Energetics machine, with homeopathic nosodes. It’s been good. And it’s been hard. And it has been all the things that this seemingly never-ending lyme treatment is.

This journey is so much longer and I have to be so much stronger than I ever imagined I would have to be. But we are doing it. Stable? I think so. Better? I think so. Even if my neurologist thinks I’m not, it’s all about perspective.

The little guy is up at Grandma and Grandpa’s this week. I hope to blog all week!

Welcome To Lyme Disease – Where’s THAT Manual

I was so impressed by my dear friend’s organizational system, when I accompanied her to her final chemotherapy session. She had a notebook, her calendar, her water bottle. She was set. Ready. Go.

Granted, she has a very organized, scientific-minded brain, so she is hard wired for it, but still. She told me that she got a manual of sorts when she got a diagnosis of cancer. It taught her how to stay organized and get ready for treatment.

Wow. A manual. Something to help me get organized to deal with the upcoming treatments. An organization behind my illness. A following that hosts walks, and makes ribbons and host shopping days in honor of my illness. Hmmmm. . think that will ever happen?

I’m a little bit envious of the welcome wagon that exists within so many illnesses. I’ve met some great people who have helped me, I’ve helped others and I’ve got so many more to help. But a “Lyme Welcome Wagon,” complete with a manual on how to navigate the difficult terrain? I don’t think that’s out there.

So, I ask myself, “What do I wish I would have had, that I didn’t have?”

Lyme Welcome Wagon Manual:

1.) A list of doctors to see and the recommended order to see them.
2.) A nurse at the first doctor’s office visit to make all your other appointments for you.
3.) A notebook with a list of support groups, supportive websites, educational resources that I can check out as I feel ready.
4.) A list of attorneys that can help with a longterm disability or social security disability attorneys that have a history of winning claims for people with invisible illness.
5.) Emotional and financial resources for the family.
6.) Contact with a social worker who actually KNOWS how to help a family with multiple chronic illnesses in multiple members of the family.
7.) Neutral reviews of a variety of treatments that have shown to be successful.
8.) Burrascano’s Guidelines
9.) Websites that offer Pilates instruction, EFT training and other beneficial adjunct supports.
10.) Truth about the psychological manifestations. Tell me that lyme causes serious mental health challenges. Just tell me. It’s not like I don’t already know.
11.) Information on why testing for Lyme is often a big fail.
12.) A book list. Complete reviews.

What chapters would you like to see in that manual? I’m nearly 4 years into this journey, and I still want a manual.

It’s Spring. I missed the mark. And there is still light.

So, I’m back online. But I’m trying to moderate myself. It’s hard not to have a computer/internet addiction when you don’t do much in the outside world.

I haven’t been blogging anywhere, really. Yet, there are people who are very curious about what we are doing for treatment these days. And then it hit me. I’m not blogging about our journey with photon therapy. And few people have.

So I guess this is my shout out. Do you think I should be documenting our journey? This is what we are using:

PE-1

This is the most well known blog about photon treatment for lyme.

Six Goofy Kids

I’d like to have a list of other blogs, but there aren’t many that I know of. If you know any, please share. And I’ll see if I can pull off some documentation of our journey.

Grief

Having Sensory Neuropathy is a wonky experience. Really wonky. Sensations to your nerves and brain are wonked out. Bad. So, last night, when I fell on the ice, it hurt. And then, later, I lost any semblance of balance I hold together on an average day.

Let’s just say “a little bit off balance” is my baseline. But this was like the earth’s driver had a penchant for the quick stop.

Then, the pain started. And it was bad. Heavy. Sharp. Nearly unbearable. Definitely non-weight bearing.

Fast forward 24 hours and I was in hell. Xrays showed nothing. Ice. Heat. Arnica cream.

Ouch.