The Morning After

I used the bio-mat last night. Dreamy. Slept well.

But here’s the kicker. My little guy heard me laughing in the kitchen. The teenager was IN THE SAME ROOM with me.

Direct quote: “You don’t laugh, mom. And you NEVER laugh when you are in the same room with HIM.”

And then, I started singing songs from A Chorus Line.

I’m going to say yes to the bio-mat.

New Adventure: Bio Mat

We ordered a bio-mat. Yes, we wanted an IMRS mat, but the cost difference is too great at this point in our journey, so we got the bio mat instead. We ordered ours through Scott, the Better Health Guy and he has been very supportive through the ordering and delivery process.

Yesterday we all spent a little time on the mat sans lights. The teenager used it full on, lights and heat and everything.

Today, I did the same. He told me that he slept better than he has slept in years. Craving that experience, I decided to try it myself. I used it on the second lowest setting. Lots of negative ions generating. I was on it for well over 30 minutes. Very, very relaxing.

Loved it. We will see what tomorrow brings. I’m going to put the little guy on it. Hopefully it will mellow the little chatter box out.

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.

 

 

I’m Not That Mom

I have anxiety. I am a worrier. It isn’t coded into my genetics. It’s caused by infection, damage by infection, patterns, methylation, you name it. I wasn’t an anxious child. At least I don’t think I was.

But I am an anxious mother. And I hate playdates. My kid is being home schooled this year (or unschooled, really) and we’ve sort of avoided “friends” for the year. Not that he had a whole lot of play dates during the past three years of our healing journey, but certainly a few per year.

Today, we had his friend over. From 10:30 until 6:30. Or was it later? It was a long day while his dad went to pick up his big brother at college. This friend is smell neutral, which makes him really easy to have over. He is articulate, confident and solid. And his parents are terrific.

I kept the friend safe enough. Last time I forgot to tell a different friend  to remove his socks if they were going to be running around. Several stitches later, I learned my lesson. So I was ready this time. Socks off. Warnings made. Anxiety on full blast.

I fed them. I watered them. I took them to the park. We went to the tennis courts. I let them play “pull the squid out of the water,” and all kinds of things that involved the possibility of joints out of place. I let them swing at the park so hard that I nearly barfed. Each time they leaned back at the same time they were flying forward my vertigo kicked in, waves of nausea rushed over me and I saw visions of the swing set flipping over. (Flashback to 1970 and my own childhood.)

But I did fine. They did fine. We survived it all. And none of us took tranquilizers.

It’s so hard with a kid like mine. He gets tired, and pretends he isn’t. He is so hungry for playtime with kids his age that he just won’t stop. He is in their faces, farting on them,arguing with them, bossing them around.  My kid is irritating. And delightful. And fun. And intense. And hard. And hungry for friends.

The buddy didn’t want to watch a movie, but was really gracious when I told him that my little guy was really tired and needed to refuel. He was a good sport when all my kid wanted to do was “fight like men” with him, after the refueling. They beat the crap out of each other for hours. And I wish I were kidding.

I am exhausted. Not by the kids, but by my worry. And my sadness that my little guy doesn’t have more experience with this whole “play date” thing. But as long of he has me for a mother, I have to accept my limits. I live with narrow options right now, still. I am more well than I was three years ago. I was AT the park. That’s a big deal.

I don’t know what this narrow world means for him long term, but for now, it’s the way we need to roll.

 

If you can’t see the Light At The End of The Tunnel

Find the light within.

Methylation Study

I’ve been studying methylation. The work of Amy Yasko is amazing, and really resonates me with me. I had a nutreval done for both the boys and I got very discouraged by the docs we were seeing. They just prescribe the nutrients that are missing or have low values for. But, this mama keeps pressing. WHY are they so low? This must be a more complex issue.  Instead of it being a puzzle, it is more like a chess game.

But they discount me and send me home with an expensive pile of supplements that have folic acid and B6 and at least one kid gets toxic. When I call the doc to discuss, he tells me that folic acid is water soluable and isn’t a problem, even if the body can’t use it. Ben Lynch, who studies and works with methylation believes differently. So, once again, I feel rudder-less.

I’ve found some lovely folks to study with. We are going through Amy Yasko’s books, chapter by chapter. I am overwhelmed.

Visit Dr. Amy’s forum. There’s lots of folks there can help you.

This is a complex world. But I’m determined to find my way around it.  And use the information to keep getting us stronger.

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

This gallery contains 2 photos.

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 →

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.  : )