Saturday, April 20, 2013

Living La Vida Lyme

The Entrepreneur's girl friend and her mother were/are in town this weekend. I really don't have a suitable moniker for the GF, whom I love dearly. I'd call her "The Law Student" but she won't be one much longer. "The Lawyer" is already taken and "Girl Lawyer" doesn't do her justice. (Law pun intended. I'm still witty. Hedge your bets on me.) "Ms. Lawyer" is a walk on the chilly side and there is nothing chilly about how I feel about her.

Geesh. If I'm not careful this will end up being a post about HER instead of today's enlightening topic, "Traveling w/Lyme." Again. We're not talking Europe or Chicago here, boys and girls, we're talking about being away from one's home base and meds. I guess I'm going to have to go with the country of her birth, Denmark, although she's lived all over the world. Most of her family are still in Denmark and when she speaks to her parents or siblings she moves swiftly between English and Danish ... her parents' native language and her first. Danglish, if you will. She is wonderful, she is brilliant, she is compassionate and hard working. She is magnificently tall and yet delicate ... I'm sooo tempted to call her "The Great Dane" but that sounds so ungainly and she is anything but. So ... "The Dane" is going to have to work.

Soooo ... The Dane and her mom were in town for the weekend bringing the Entrepreneur some bookshelves from Ikea. The Mom is going to Denmark soon to spend some time with family and so it was wonderful to see her before she left. As much as I love The Dane, I love her mother. The apple didn't fall too far from the tree there. Plus, I love having someone with whom to oooh and ahhh over our children. We each think each other's child is remarkable and it feels pretty great.

As is our habit, we go out for dinner when the Dane is visiting; something I very much look forward to every month. Yet tonight, I was a little anxious as I was bringing my arsenal of meds/med food with me for the Very First Time because medication is something with which one does not triffle. Five minutes off? An hour because you were off an hour in the morning? Not a HORRIBLY big deal but several hours? A missed dosage? Not cool. At and the prices I'm paying to get well, I'm going to be compliant if it kills me before Lyme does!

I'm taking this healing thing as a personal challenge. Yeah, I know I have yet to experience the Mother of All Herxes and yeah, some of my Peeps are kind of waiting to see when it happens and how I'll react. My guess is that first it scares me, then it angers me, and then I'll be disappointed I'm not better yet. THEN I'll sob. The Mack will call me and cheer me on, tell me his own tales of healing and I'll laugh at him. He's a "tough guy" with a heart of gold. A Lyme Warrior/Champion is there ever was one.

Wheee, another loop on that roller coaster.

So I got ready for the evening out as if it were a first date, yet instead of attending to mySELF I attended to my MEDS. Pills in a sealed snack sized baggy? Yup. The Liquid Gold and 1 tsp. measuring spoon in another larger baggie? Check. Ok. I need to eat 40 grams of fat w/the Liquid Gold and at night I usually eat an avocado, yet somehow I couldn't imagine myself nonchalantly whipping out an avocado as we sat in the waiting area of a restaurant. One quarter of a cup of walnuts went into another snack sized baggie and into my bag, which was now above capacity and unable to zip closed. A quick redo netted me a bunch of old receipts and unused tubes of lipstick on the counter and room for my meds. Note to self: purchase awesome bag for medical reasons. Have I mentioned I am the Queen of Justification? I am.

I had forgotten that The Mom had never seen my new digs and had forgotten that maybe it would have been a good idea to do some cleaning lite. Whoops. The Mom, like The Dane, is incredibly gracious. After a rather quick tour of my rather empty abode we were off. You'd have thought I was leaving my oldest child for the first time. I kept fingering my cell phone and bag to make sure my meds were in there. I mean, this was my DEBUT. Another chance to prove to myself that I can still "live" while treating chronic Lyme.

Of course, the place The Entrepreneur and The Dane love most does not take reservations ... and it's a Saturday night. Ugh. A one hour wait and I feel the first wave of dizziness hit me. Fortunately one can be dizzy and sitting down in a restaurant and no one is the wiser. UNTIL the med alarm goes off. I think I've mentioned that it's important I take them on time. Therefore, the alarm is adjusted so I can hear it. Apparently so can everyone else. A tad bit on the embarrassed side I hopped up quickly (BIG mistake) and stone cold sober staggered my way into the bathroom where I locked the door and sat on the floor waiting for the room to stop spinning, which eventually it did. I then prepared as if I were about to conduct surgery. I washed my hands, got out all my stuff and lined it up on the counter, and washed my hands again. I am OWNING this. The first set of pills go down with nary a hitch. No gagging, no spilling water on my shirt, and no nausea. With shaking hands I took out my tsp. and got ready to open my Liquid Gold. Yup. Someone rattled the door handle. I quickly put down the Gold and cheerily said, "Just a moment, please." Come on, we know this isn't going to take "just a moment." What I SHOULD have said was, "Try the men's room. I'm busy doing drugs." But I didn't. Just in case some germs came through the lock on the door when it was rattled, I washed my hands again and took The Gold. Really. In another world with another set of vocabulary, I had finished the first lap, my four month old was not screaming at home w/out me, and I was still vertical. I quickly downed about 16 oz. of water, put my stash back into hiding and reappeared walking ever so gingerly across the restaurant. When I sat back down next to The Entrepreneur I tried to slide right back into the convo except I had forgotten one rather memorable step in the med procedure. Brush one's teeth! Yup. My Liquid Gold was visible for all to see ... and I was busted. I had to own up to the med stop in the rest room and then answer questions about "my condition." Who says that in 2013? No, I don't look pregnant. Not even close.

I HATE telling people I have Lyme because if there's one thing I DON'T look, it's sick. Hmmm. Tomorrow's topic is, "What To Say to the Chronically Ill" and the flip side, "What NOT to Say to the Chronically Ill" will be covered as well. #1 for the latter will be, "But you don't LOOK sick!"

But I digress. So we went through how great I look blah, blah, blah. Thankfully our table was ready and into the restaurant we went. I was hoping my head was hurting because I was hungry and was able to easily order off the menu: steak and Brussels Sprouts. I did NOT eat any bread but I did have small bite of the potatoes on my plate. Next time I'm just going to ask that things be left off I shouldn't eat. Why tempt myself, right? The steak was great and the Brussels Sprouts are the claim to fame of the restaurant. As dinner went on I began to get that feeling like the earth was moving beneath me. I steadied myself by grabbing the sides of my chair. Then I drank a lot of water. Finally I had to just put my head back. I mean, it was either that or have it land in my food ... which has actually happened before. I tend to push myself too hard too fast. But this time I figured appearing bored was preferable to appearing smashed. The Entrepreneur is pretty intuitive and having been my son for 25 years he also knows me pretty well. I could tell by the look on his face across from mine that he wasn't buying any of it.

I actually managed to finish most of my dinner and get myself back to the car before the sweating started. THANK GOD I was wearing real deodorant and not my Thai Crystal which does not work on Lyme body odor. Yay, I'm detoxing. Yay, I stink. Literally.

I've been in bed for the past three hours determined to get this written so I can keep my commitment to writing daily.

Oh. I finished the jigsaw puzzle and have a new brain app on my phone ... I can't figure it out yet but The Dane's mom loves it. Clearly, just as my biceps are lightweights, so is my brain.

But I did it. I showered, went to the local health food store today, bought some probiotics online, went out to dinner like a person who doesn't looks sick, and had a moderately successful drug interlude in the rest room.

Life is good. I survived. In a few minutes I'll take some probiotics and go to bed.

Tomorrow ... some variation on how to talk to the Chronically Living. And an fyi up front? We really don't want to hear that stupid country song about living like we're dying. Trust me on this.


  1. Dear Ruth, my hero:

    Maybe you know about this already, but there is an awesome website:

    On this site you will find the very important explanation for healthy people called The Spoon Theory:

    This explains why people like us who have limited energy and chronic illnesses are called "spoonies." This is also a useful hashtag on Twitter (#spoonies) if you are interested in finding other people with limited energy for various medical reasons.

    Congratulations on successfully going out to dinner, taking all your medicines on time, and not puking at any point! A huge victory for you! What does Liquid Gold do to your teeth? And have you seen the wee disposable toothbrushes you can order from because going to the drugstore is too damn tiring?

    I started at the end of your blog and now will work my way back to the beginning!


  2. YES! Thank you so much for sharing that, Nellie! I think I'm going to go edit my latest blog post to include those links.

    Re: Liquid Gold (Mepron) is a very thick school bus yellow liquid that clings to everything it touches. Including teeth.

    Thanks so much, Sister Warrior.