A Typical Atypical Day in the Life (Part I). . .

. . . of a woman with Lyme, CFIDS, and MCS partner-training her bouvier des Flandres service dog.

It was atypical because I went out, which I don’t usually do. But the things that occurred, and the way I went out, were mostly typical. A lot of Barnum’s behavior was atypical for the away-from-home Barnum, which is great news!

Today was so full, and I have so much to say about it, that I’m going to have to break it into two posts and interrupt my Waspish Wednesday series (although, I think I can find some things to be waspish about that occurred today). I can always find that dark cloud inside the silver lining!

Since it is Multiple Chemical Sensitivity (MCS) Awareness Month and Lyme Disease Awareness Month, I’m also trying to massage into this post the ways that my day were and were not typical of having MCS and Lyme.

Despite all the explanation, it was actually a fun, exciting  day, full of hope, promise, and dog slobber. I’ve included pictures and video to keep things lively.

Let’s begin, shall we?

I woke up at 1 PM (typical because I went to sleep at 6AM — I have all sorts of sleep disorders) and managed to get my pain under control with opiate medication within a couple of hours. This is typical these days, but a couple of years ago, when my Lyme was more severe, I always spent the whole day in bed, totally exhausted and barely able to move from the severity of the pain, with the medication simply keeping me from ending up in the ER or literally paralyzed by the weakness it accompanied.

There is only one strong pain medication I tolerate; I have tried many, and I have bad reactions to almost all, which range from true allergy (trouble breathing, edema in ankles) to “just” sensitivities/bad reactions (such as chest pain, anxiety, hallucinations, nausea, etc.). This is ultra-typical of people with MCS. We are usually very sensitive to medication, and the fact that I’m able to take so many medications makes me extremely fortunate and atypical for an MCSer. The fact remains that this pain medication is not as strong as I have often needed.

Nonetheless, I’m not going to complain because even though I have not tolerated about one-half to one-third of the Lyme disease and coinfection antibiotics and antiparasitics I’ve tried, I’ve tolerated enough of them that I am not dead. I feel fairly certain that if I had not gotten aggressive treatment when I did, or soon thereafter, I would be dead by now. I was headed in the direction that this woman is now in, sadly.

Instead, today I enjoyed a good day, which means I was able to get out of bed and train with Barnum and not be whomped by pain or fatigue or nausea or dizziness or migraines, etc., during or immediately after. This is atypical right now, but I’m hoping this kind of day is a trend toward the typical.

In fact, I was feeling so good that I put on makeup — and a clean shirt without holes or obvious stains! — which is outrageously atypical. Why did I take such drastic fashion-oriented measures? Because my hair was clean, and I wanted to take some pictures for this post, and I decided if I was going to be in the picture, I wanted to look good. The last time I looked really good in a picture was 2007 (before my Lyme disease became severe).

My hair was clean thanks to the bath I had yesterday, which was the first bath I’d had in ten days — a little longer than I normally go between washing, but not much. That’s because bathing — even with the help of my PCA doing a lot of the work — is exhausting and often painful. Sometimes I don’t bathe because I’d rather use my spoons on more meaningful pursuits, like blogging or dog training, and sometimes I don’t bathe because it’s just flat-out impossible. (Thus, clean, curly, shiny hair? Atypical.)

I know it's a strange picture, but it's the best of the bunch.

(I’ll put up more pics of Barnum and me from today on our new FaceBook page. I have not yet figured out how to get the “Like” button up here, so if anyone knows how to do that and can help a code-impaired blog-gal, I’d appreciate it! We need 25 people to like us for it to become an official “fan page.” I have no idea why or what that means, but it seems like a good thing to aim for.)

Bathing is extra lugubrious because I have a PICC line, which is how I get my IV antibiotics for Lyme. (I’m also on multiple oral antibiotics and an intramuscular one). PICC line dressings have to be kept clean and dry.

This is an atypical PICC line dressing because I can't tolerate almost any of the materials normally used to dress and keep a line in place, including disinfectants, adhesives, and plastics.

It is possible to purchase waterproof PICC line covers for bathing or showering, but I can’t tolerate them; they’re made of vinyl, which is horribly toxic and fumey. Thus, my PCA wraps my arm in a long strip of an old sheet, and we tape it with a certain tape that I don’t react to (much) but that stays on if it gets wet, and them I keep that arm out of the water/spray, and we try to get it all done fast.

Back to the makeup and clean hair. Normally I don’t wear make for several reasons:

1. Most makeup is toxic and not safe for me. A few years ago, I found a great makeup source called Alima Pure, which only uses minerals, will sell you samples to test for tolerance, lists all their ingredients, and is odorless and inert. It is great stuff, but it does take a tiny bit more effort to apply, and with CFIDS (chronic fatigue immune dysfunction syndrome) — which I also have, predating Lyme — plus Lyme, every tiny exertion is a big deal.
2. I hardly ever go anywhere or see anyone except my PCAs, Barnum, and Betsy, and they don’t care how I look. And I’m not one of those girls who puts on makeup just for herself — not anymore anyway. Too many spoons to use all my energy for the day doing my face. If I put on makeup, I’m doing it so I can look good for somebody else. In this case, that’d be you!
3. If I do go somewhere, I have to wear a cotton-and-carbon filter mask over most of my face. Never wear makeup under a mask; it smears everywhere, no matter what you try to do to prevent it, ruining your makeup job and your mask.

It’s hard being a femme with MCS! Lyme hasn’t helped matters any. In addition to the huge amounts of weight I have gained and lost and gained again due to my illnesses, I also lost my hair to Lyme for quite a while.

Since I got Lyme — from a tick attached to the nape of my neck, under my hair — I have kept my hair very short during “tick season” (March through November), including shaving it severely in the back, where my Lyme rash is — to make it easier to do thorough tick checks. On two occasions, I actually cried while the poor woman who came to my home cut my hair. (Of course, due to MCS, I can’t go to a salon; and this stylist is fragrance-free.)

This year I decided, hell no. Lyme has taken too much from me, and I am reclaiming my hair! Maybe this is stupid — after all, I have found two ticks on my scalp so far this year — but a crip femme’s gotta make a stand at some point, yeah?

Anynoodle, today I felt pretty (dammit!), with my almost-shoulder-length clean hair, and I decided to capitalize on it. I put on my makeup and then did some training with Barnum (the idea was that then my PCA would take pictures of Barnum and me).

When I came out of the bathroom with my “face,” Barnum looked at me with alarm for a moment. His eyebrows jumped! It never ceases to amaze me how observant he is. Really, it feels almost supernatural sometimes.

Since it was the first time he’d ever seen my face look so weird, the message his expression conveyed was, “Mom, what happened?” Then he realized it was just me doing some stupid human trick, and he moved on.

We trained some skills I can’t remember (typical memory problems of Lyme, MCS, and CFIDS/ME), but I remember that it went really well, that he was totally in the game. I remember that some of it was using the Clik-Stik for practicing position while walking. (I seemed to have poisoned my cue for that when we’re in the yard — I rolled over his hind foot one day in the yard, and now he is afraid to be in that position, but only in the area of the yard where we used to practice. In the house and elsewhere — as you’ll see in our exciting video footage! — he is doing well.)

We are rocking the eye contact.

Some other typical/atypical MCS and Lyme things are visible in the photo above. For example, even though I have huge breasts that are sagging down to my waist, and I wanted to look good, I am clearly not wearing a bra. I used to wear bras when I needed to — for work or doctor’s appointments or whatnot. Since I got Lyme, I cannot tolerate them at all; the pressure against my skin is too painful. This is true even though I have the most comfortable bras ever made, which are organic cotton, without latex, safe for my MCS, which I buy from Decent Exposures.

In fact, my T-shirt is also organic cotton, low-impact dyed, as are my pants, which I also got from Decent Exposures. It was a huge step up for me in the fashion department when they started offering organic cotton in a few colors other than “natural.” (That pink nightshirt in the picture up top that shows my PICC line? Also Decent Exposures. Sensing a theme?)

You may also notice I have a funny-looking arm band around my biceps. That is an organic cotton PICC-line sleeve I sewed for myself out of swatches I got from Decent Exposures. Most people with PICCs use mesh sleeves provided by their infusion company. They are comfortable and functional — and I’ve never been able to wear one because they totally reek of fragrance that they’ve absorbed from the people and products at the infusion company pharmacy.

I used to use gauze bandage that I wrapped around the PICC to keep it in place, but the chain pharmacies all changed their gauze bandage to a “new, improved” type that doesn’t hold its shape and is therefore totally useless after a couple of hours. I changed tacks.

For several months, I wrapped my arm with an Ace bandage that I’ve had since high school, which I washed periodically if it got too dirty or got fragrance on it from me going “into the world” (i.e., the hospital or a doctor’s office). Predictably, the stretchiness wore out over time, and it is now also useless, as well.

Thus, I got (even more) creative and sewed together this PICC line sleeve. I wanted something functional, but I also wanted something pretty, because — as I hope is clear by now — I’m not really able to attend to my appearance much. If I have to wear something around my arm, I’d like it to be attractive, if possible.

As I said above, I’m a femme, dammit, and I can only take so much! Sometimes I have to get feisty!

It doesn't always stay on, bu it's better than nothing.

I’ll do an album on our FB page of more photos of the PICC-line sleeve so you can see the other sides, if you’re interested.

Once the fashion shoot was over, I took Barnum out and he peed right away, but he didn’t poop, even though I knew he needed to. Since it wasn’t raining, a rare event lately and not long-lived, I decided to take him for a walk.

Taking Barnum for a walk, even just getting him outdoors to potty, is often a struggle for me. Lately, I’d say it’s about even odds that I can take him to his toileting area (which is right next to the house, just off the ramp), and it’s pretty unusual for me to feel well enough to walk him using my indoor powerchair.

The indoor chair doesn’t allow me to recline and elevate my legs, which I need if I’m going to be sitting up for any period of time. It also doesn’t have a seatbelt and is not as sturdy, so I have to use some more muscles to keep my body in position. These little details are part of living with CFIDS and Lyme.

Nevertheless, today was a good day, so we went down the ramp (practicing the cues for “behind” and “follow”) and then out into the yard. His “wait” at the gate was excellent. We moved down the driveway, and I experienced the strangest sensation: a loose leash! The Whole Damn Time! YEEHAW!

ATYPICAL! At least, it has been, but hopefully, soon it will be “our new normal.”

Barnum trotted along on his loose leash, periodically taking treats, like it was just a standard, normal behavior — which continued as we went down the street! I was completely in awe. We were doing so well that I radioed to my PCA and asked her to come to the street with the camera to videotape us.

Unfortunately, by the time she made it outside, black flies (which bite) and mosquitoes were swarming Barnum and me, making it very hard for him to concentrate. His groin and anus got all bitten up. He doesn’t follow every one of my cues in the video below, but before the plagues descended upon us, he was a rock star! (You can see the flies around us and sometimes in front of the camera lens.)

Note: This is a very visual video, with almost no dialogue, so I didn’t provide a captioned version or a transcript. Basically, what happens is that Barnum and I walk a few yards in one direction, turn around and walk back. I ask him to do a few simple behaviors, like sit, down, and “Watch me,” and that’s pretty much it.

Then, we carried on in the adventurous spirit of the day and loaded up my crappy chair (the one that is not currently dead and works with the van’s lift, but which has no battery charge left), and headed first to the local coop (about two miles from my house) and then to the POND!

More on those adventures tomorrow, and what was typical (and worthy of waspishness) and what was atypical.

A last Lyme awareness note: While I was writing this post, I scratched my head and felt a little bump against my scalp. Yup, it was a tick, attached. Betsy had checked my scalp (and the rest of me) thoroughly about three hours previous, so I know the tick wasn’t there long. Also, it was a dog tick, not a deer tick. (Deer ticks are the ones that carry Lyme, although all ticks can carry nasty diseases.) I promise, I am working on that “How to Tick Check Your Dog” post. However, in the meanwhile, please please please, tick check yourselves, every day!

– Sharon, the muse of Gadget, and Barnum, loose-leash walking SDiT?!?!

P.S. Still accepting entries/comments at my other blog before Barnum chooses the Jackpot winner.