Category Archives: My story

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It’s Cinco de Mayo and I’m not stressed out.

The biggest day of the year for the restaurant company for which I used to work is Cinco de Mayo. When I was a server, it was a gruelling 12-hour, non-stop day during which I would take about 50 times the number of steps I do now in a 24-hour period. The restaurant was new, busy and understaffed. It was exhausting and exhilarating, great money and unforgettable camaraderie. When I was a general manager, it was more stressful and the tips were replaced by a sense of accomplishment. As a regional manager, the amount of work rivaled that of a new restaurant opening. I tried to be the conductor and the first violin at once, as well as the advertising, PR and marketing director. We planned for months in advance: budgets, entertainment, products, staffing… Once I was the COO, things were easier. I oversaw the managers’ work and didn’t have to be there late into the night. Today is the first May 5th since 2003 that I haven’t been focused on festivities and maximizing sales. Ten years. Although, I desperately miss working, I will celebrate this relaxing May Sunday as a silver lining to my situation.

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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

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BHA, Parfum and Triclosan, Oh My!

I am changing all the toiletries I use. I’ve always used Dove soap on my body and Simple face wash followed by fragrance-free Moisturel. I switched to Tom’s of Maine deodorant a few years ago after a lecture from my husband about aluminum in antiperspirants (“I don’t like not sweating”, he said). So, I’ve managed to use fairly decent products, but only because I can’t stand the smell of most of them, not because I was trying to be healthier and keep bad guys off my skin and out of my body.

Well, I’ve been reading Food Babe’s blog for a while and I trust her research (she is obsessive about avoiding toxic products to the point that, for example, she won’t use the cleaning products at her gym. I, on the other hand, have spent the vast majority of my days with my hands soaked in bleach ~ such is the life of restaurant/bar workers ~ and I’ve never looked twice (actually not even once) at the ingredients in the cleaning products I use in my home). After reading this post and this one, I looked up some of the products she recommends and, if I buy them online rather than have my husband pick them up at the local drug store, they aren’t really any more expensive than my normal choices. So, what do I have to lose?

Here is what I ordered and I’ll let you know how I like them (sister-in-law, J: I thought you might like some of these) [I just realised I have two sisters-in-law with names starting with J. I was talking to J.K., although maybe J.B. likes these sort of products, too!]:

  • Kiss My Face Bar Soap -Pure Olive Oil [update: love it, but these bars are HUGE ~ even my husband’s huge hands have a hard time holding on to them; it slipped from his grip and hit his foot and really hurt it! Also, he’s not a fan of how slimy it is.]
  • Kiss My Face Moisture Soap Liquid Fragrance Free [update: love it]
  • Kiss My Face Moisture Shave Fragrance Free
  • Avalon Organics Hand & Body Lotion – Unscented Aloe [update: love it, although, if you put it on right before bed, you kind of stick to the sheets even though it feels like it has been totally absorbed… Kind of odd]
  • Avalon Organic CoQ10 Facial Cleansing Creme [update: GAG! Warning! This is VERY VERY LAVENDER-Y and citrusy! Even if you like lavender (which I don’t), this might be too much for you.]
  • Avalon Organics Shampoo-Tea Tree Mint [update: love it, but, like so many “healthy” shampoos, it does not froth up the way typical shampoos do ~ just something you have to get used to.]
  • Avalon Organics Conditioner-Tea Tree Mint [update: love it]
  • Yerba Prima Natural Skin Brush [update: love it]

I bought them all from vitaminlife.com, which seemed to have some of the cheapest prices (Amazon does, too, but many seem to come in multipacks and I didn’t want to commit to three bottles of shaving cream when I don’t even know whether I like it yet).

To be clear, I don’t think this will have any effect whatsoever on my illness, but, once you start making changes like filtered water, air purifiers, healthier cooking oil, and antibiotic-free/grass-fed/free-range/organic/hormone-free/care-free/well-socialized meat (please watch this Portlandia clip ~ honestly not too far from the truth in this corner of the country!), the clean attitude just seeps into other areas of your life. Except your dogs. Somehow, no matter how many times I demonstrate and lecture, they will not wipe their paws at the door before coming inside.

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I’m A Lucky, Lucky Lady

Last week my friend Z. came by my house with her baby girl and we just visited like (almost) normal people and watched the little munchkin play with toys and pat the dogs. I also got a package from my friend E. in the mail with all sorts of fun things to read and loads of the Extra Strength Menthol Halls lozenges I like. I also got a postcard and what looks like a year’s supply of energy supplements from my friend C. I also got a box full of organic produce from friends of ours who live nearby, two letters from my Father, an Easter care package from my Mother, a phone call from an old friend, emails from my nieces and the list goes on and on.

I was throwing myself a bit of a whaaa-I-have-no-friends pity party a few weeks ago, so it is really good to have my nose rubbed in the fact that my life is bursting at the seams with so many caring, thoughtful people that haven’t forgotten me even though I went into hiding, while this illness become my prime focus. Recently, I’ve been trying to reach out and take some chances. I’ve gotten in touch with a few people I neglected and have entertained the notion of getting a haircut or having a lunch date. I may not have the energy most days to keep up my end of the bargain when it comes to maintaining communication, but at least I know, if I can put myself out there once in a while, there will be friends and family waiting to meet me right where I am.
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Oh My Good

I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.

My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.

Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.

It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.

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