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.)

Sharon with her head titled down, mouth open, talking. She has wavy salt and pepper hair, a rosey complexion, wire-frame pink glasses with rhinestones at the corners, and is wearing dark red lipgloss and dark purple eye shadow.

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.

Sharons inner upper arm and elbow with PICC line and dressing. The PICC line is a very thin white plastic tube coming out of a round "biopatch" which covers the entry site of the line. Several steri-strips hold the biopatch and line in place. A hypoallergenic clear dressing that looks like a piece of plastic covers the whole area, with two pieces of hypoallergenic medical tape holding down the dressing. The line comes out from under the dressing to a red clip, which is opened when flushing or infusing. A white plastic cap connects the line to a clear extension tube, which is hooked up to syringes with medication or saline for infusing or flushing. No needles are involved.

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.)

In Sharon's yard, green with spring, Barnum stands beside Sharon on her left and looks up into her eyes while she looks down into his. Sharon is smiling.

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!

Closeup of Sharon's upper arm and elbow. Above the elbow is a sleeve made out of several small squares of different-colored fabric, stitched together like a quilt, mostly pastels and prints in pink, blue, purple, and white.

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.

12 Responses to “A Typical Atypical Day in the Life (Part I). . .”

  1. 1 Karyn May 25, 2011 at 12:46 pm

    I’m so happy for your good day! I am grateful that you got the Lyme treatment in time to still be in my life HUGS
    I have some thoughts for your picc line. Maybe I could help make an organic cover that holds and/ or what about getting the netting that I have used with sores/ injuries. It was OK for me once the rolls detoxed but I know all MCSers are different. It may or may not be enough for a picc line. Its called Curad Hold Tite tubular bandaging. It comes in small and large sizes. Mine came in a first aid kit but it can still be found online. Let me know if you’d like some links. I swear by the stuff for tough bandaging areas!

  2. 2 Sharon Wachsler May 26, 2011 at 2:45 pm

    I could NOT get these to detox. I washed and washed them in TSP, hung them on the line in the sun, wind, and rain. Nothing helped.
    Yes, would love to talk to you about a cover some time when I’m feeling better. Very sick today. Will email.

  3. 3 MiMo May 26, 2011 at 11:46 pm

    I looked at the pics on FB: beautiful! How cool that someone is making a makeup that you can use so you can play once in a while 🙂

    Also, I kinda think your arm band is cute. Reminds me of the pants modifications the artsy kids in my high school would do with random scraps (insert in side seam to make super wide legs or whatever).

  4. 4 brilliantmindbrokenbody May 29, 2011 at 1:41 pm

    I hear you on the hair! My POTS has caused me to hack my hair off short every summer because my hair is so thick that just having it rest against me, even in a braid or a ponytail that limited how much of me it covered, increased my temp too much. This year I am finally trying to just put it up instead of cut it off. I joined a long hair forum and bought a bunch of forks and combs and a massive expensive clip, in the hope of being able to secure my hair in a way that I can leave it up no matter what I’m doing. I’ve used clawclips in the past, but I can’t get in the car wearing them because I need to be able to rest my head back, not to mention the darn things aren’t comfortable. I also tried sticks, but my hair is so thick, heavy, and slick that I can’t secure it with plain sticks. I have so very much hair that barettes that will manage all of other people’s hair will often only hold 1/3 to 1/2 of mine.

    So here’s hoping that something I bought lets me secure my hair in a way that doesn’t hurt. I spent a cringe-worthy $70, but I’ll have 17 assorted thingamagigs (including 2 pairs of matching 2-tined forks, though if you count them by the pair I suppose it’s 15 hair thingamagigs) that I can theoretically put my hair up with. I’m trying not to get too excited, but I’m hopeful.

  5. 5 Sharon Wachsler May 30, 2011 at 12:04 am

    Ooh, this has opened up dangerous worlds of overspending I hadn’t considered. I use bear claws,mostly, but as you point out, they are not that comfortable, and they are also not so attractive. And if you recline your head (which I do most of the time), you have to take them out. Betsy has taken to teasing me about bundling up my hair and clipping it, and then unclipping, and then clipping…. The other thing I use is scrunchies. These tend to not hold the hair as well, plus most of mine, the elastic is shot, and if I buy new ones, it will be ages before I can outgas them enough to use them (many, many washings). There was once a place that made organic scrunchies, but of course, tehy went out of business. Also, I learned from Sex & the City that they are horribly unfashionable and out of date, and that was over 10 years ago!
    My hair is also extremely slippery. I once bought sticks, and the woman tried to convince me that ANYONE could use them, and my hair was so long, they would work great, etc., and then she tried to make them work and was like, “Wow, your hair really IS slippery!”
    My hair is not an even enough length, also, for scrunchies or barrettes, and I also have a lot, but fine. However, when I got sick, it thinned, so I don’t have the volume I used to. And now with the white hairs, who knows how it will act? They seem to be renegade.

  6. 6 Sharon Wachsler May 30, 2011 at 12:06 am

    p.s. i’ve never been able to use combs or anything like them. they just slid right out.

  7. 7 MiMo May 30, 2011 at 3:21 pm

    In case you are still looking for more hair things after trying the stuff you just bought (haha, seems we can never have enough hair things, right?), I highly recommend Goody SpinPins. They are metal pins that you screw into hair that’s been gathered into a bun or whatever (I don’t think they will work if your hair isn’t long enough to at least twist up some, but beyond that they are very flexible).

    It takes a little bit of learning to figure out how to use them, but once you do they are awesome! I use 4 to hold up a super-secure bun, but my hair is thick and past waist-length, so if your hair is shorter you could probably use just the 2. They go in parallel to your head, like sticks/forks, but don’t stick out and stay in way better once you get the hang of them.

    (oh, I’ve tried some knock-off ones and they really are no where near as good, worth getting the brand-name ones if you can.)

  8. 8 brilliantmindbrokenbody May 31, 2011 at 1:02 am

    You might find that what I just bought would work well for you – bone, wood, and horn forks. I’ll tell you how they work for me. I’ve got extraordinarily thick hair that is very slippery. I tried hairsticks, but they very quickly fell out. I’ve also tried Hairagami and Hairdini, but both of those fell out within minutes.

    I do much the same thing with my clips right now, which results in losing them all the time. I managed to find 3 that had long enough teeth to secure my bun but were still narrow enough that they didn’t cover half my head like the massive ones. So far, they’re the best I’ve managed for securing my hair.

    I can put it back in a ponytail or a braid but that isn’t enough to manage my temperature much of the time. My hair resting against my body just jacks my temperature up too much, even if it’s only touching a limited place.

    My hair is more-or-less even; it’s got a couple inches worth of layers at the bottom because it grew out from a very short cut. It now reaches a few inches beneath the lower edge of my shoulderblades.

    One of the hair thingims I bought was a Ficcare clip. They seem to be tremendously popular with the longhaired crowd, and they look like they’re actually big enough to hold my hair, which is a novelty for me.

  9. 9 brilliantmindbrokenbody May 31, 2011 at 1:03 am

    I’ve thought about getting some of those; you’re not the first person to suggest that they are helpful. Good to know about the Goody vs knockoffs. (of course, the Goodys are knockoffs themselves, but they’re much higher quality than dollar store knockoffs)

  10. 10 staticnonsense June 18, 2011 at 11:57 am

    pah on bras! i used to feel a lot of shame from society’s constant pressuring toward bras, so when i started to realize i just couldn’t wear them anymore (hear ya on the pressure hurting, + that pressure contributing to shifting of my ribs) i would always feel terrible for my nipples being ‘obvious’. but eventually putting bandaids on just hurt too much. my skin’s just gotten more and more sensitive over the years, and the adhesive feels like tearing my skin off. now when i need to i just wear undershirts (for my more see-through shirts) or just go without. screw society for shaming us for putting our disabilities first and their standards of beauty and control last! rock our sagging tits!

  11. 11 Sharon Wachsler June 18, 2011 at 2:10 pm

    LOL! See, now I think someone needs to make a T-shirt that says “Saggy Tits Rock!”

  1. 1 Waspish Wednesday: Ask Alima to Ditch the Fragrance « After Gadget Trackback on September 28, 2011 at 6:30 pm
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