Superstition Ain’t The Way

Agh, I can’t stand it, I can’t just leave you sitting with that bad. I tried in earnest to let my last post hang out here in the e-niverse, sullying the e-tmosphere, because that’s my reality and it is uncomfortable and why shouldn’t it fester there on my blog’s home page for all a few to see? But it’s like a little lead weight in the back of my brain, so superstition be damned: I want to shout about what a good week I had. I can’t believe such a baby dose of immunoglobulins is making a difference, but it seems to be. This is so exciting. Here’s my week:

Last Thursday I was in rough shape. My period was due and I hadn’t slept as per usej, but I drove to my myofacial therapy appointment, which is 4+ miles away. That is twice as far as anywhere I have driven in the last 3.5 years. I credit my friend Jak for this because I was thinking about how she has to drive everywhere where she lives and it gave me a little push. I also have been doing our finances for tax season and saw that I spent $650 on Ubers (taxi service) in 2015–solely to get to/from healthcare appointments–so that gave me another incentive to drive myself (truthfully, I probably shouldn’t have driven. I wasn’t all there–not quite present enough–and doubt my reaction times were optimal, plus I got a bit lost, but I’m proud of myself for pushing my envelope). Oh, and I stopped by a grocery store on the way home! Very briefly–to buy chocolate Easter eggs–but still!

I had three complicated things I needed to mail, so, Friday, I drove to the post office for the first time in almost 4 years and spent quite a bit of time standing at the counter, talking to the postal woman, boxing, taping, addressing etc.

Family love at the cemetery.

Family love at the cemetery.

Saturday, even though my period had just started, I was still able to go to the cemetery on my scooter with the boys and husband. I want to take a moment here to remember the first few times I went to the cemetery on a mobility scooter in 2013, a year after being housebound. I wept looking at the trees and feeling that freedom, then I almost passed out from the exertion of a 2-sentence conversation with some people we ran into and then I went home and paid for the jostling of my bones with days of pain. On this very day in 2014, I was struggling through the aftershocks of a cemetery trip that were worse than anything I deal with now: 

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Easter Sunday I wasn’t doing too well, but I still managed to put together a treasure hunt for my husband (with the aforementioned chocolate eggs), which involved walking all around the house and up and down stairs, planting clues. I did a “Find It” treasure hunt for the dogs, too. Easter isn’t just for kids.

Monday, I did laundry (no folding or putting away, but still…), talked to my friend for 1.5 hours (he did most of the talking, which is good because, although I’m not drained as much by prolonged conversations, it still definitely hits me hard) and then I drove to the dog park with the boys… by myself… and actually walked a little bit… *Pause for gasps of shock and awe.* I’m going to take another minute to remember the first time I made it to the dog park after those long horrible months, years: My husband drove, of course, and I walked excruciatingly slowly to the gate, feeling winded, heart rate through the roof. I made it inside and then sat on the ground just inside the gate. When somebody I knew tried to talk to me, I nodded and smiled feebly and then looked at my husband imploringly until he deflected the conversation away from me. The memory of that effort–and the fear of the repercussions–brings tears to my eyes.

Tuesday, I had my infusion and, Wednesday, I drove to an appointment (close by)–on the day after my infusion, mind you.

Getting fluids in the garden.

Getting fluids in the garden.

We’ve had gorgeous weather this week and, although it certainly helps because I’ve been sitting in the garden for hours every day, I don’t think I can say it is the cause of my good week because the uptick started days before the sun shone. Thursday, we took advantage of the weather and went to the biggest, bestest dog park in Seattle, which is a ways away on the East side. I haven’t been there since my birthday last year in May and it was such a treat to see Riley swim (while Bowie stood in the shade, panting and looking miserably hot, as if he wasn’t a short-haired breed that came from Africa). We spent an hour and a half there (I had my scooter, so didn’t walk) and, when we got home, I started cooking lunch. I didn’t even feel the need to rest. I better add these: !!!!

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“Ducks, ducks, ducks, gotta get the ducks.”

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“Don’t make me go out in that sun, Mama.”

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“Seriously? Another photo? Hurry up, there’s hardly any shade here.”

I’ve been dragging again the last few days: headache for the first time in a while, very stiff neck, muscles feeling heavy and painful, slightly sore throat, sensitive to sound etc. Probably because Friday I started to write this post about having a good week and the gods’ ears perked up. BUT, I’m dressed, I’m sitting outside, I’ll cook something in a bit, I’m cheerful. I’m not in bed, sick, poisoned, despairing. I’m functioning. I’m even writing.

So, there. KNOCK ON WOOD, TOBA TOBA, BAD HARVEST, PATUEEY OVER THE SHOULDERJust let this be. My bowels are a nightmare, my sleep is horrific, my brain packs it in on a regular basis and my stamina, energy and strength are still about 1/4 of what they used to be. But 1/4 is better than 1/10. I’ll take it, gratefully.

Title Credit <— click on it, go on, it’ll make your day better. 😊

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Mount Rainier (taken from the car window while speeding down the highway).

P.S: Dear friends, please forgive my ridiculous shiteness at answering your comments here on my blog. I appreciate each and every one of them and I’m humbled that you read my rantings at all, let alone take the time to comment. It really means a lot and I’ll try to do better. Thank you! X

New In The Garden This Week: Faux-camping, Flower Fireworks and a Birthday Party For Me!

Our fairly new, fancy Kenmore refrigerator (which is about three times the size of the one I had growing up (which is still alive and kicking) and, being one of my first major kitchen appliance purchases, I researched very well, even going so far as to subscribe to Consumer Reports to read up on it) has broken for the third time in a month. Today, after the repairman’s third visit, we opened the fridge door and could hear the motor blade whacking off something, so he’s going to have to come back a fourth time. While our kitchen is a repair shop, I am sequestered in the garden with the dogs, cooking breakfast by camp stove and typing this post under a “parasol”. 🙂

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Our garden is like the world’s slowest fireworks show. Gone are the lilacs, cherry blossoms and tulips. As they wilt and brown, now emerge lilies, irises, peonies and my favourite: the pom-pom tree (not a technical term 😉 ).

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Perfect Peonies.

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Luscious Lilies.

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Stunning strawberries that I can’t eat anymore! 😦

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Irresistible Iris.

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Riley glamour shot.

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Romantic Rhododendron.

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Dr. Seussian Pom Pom tree that snows petals down everywhere.

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Another “rhody”.

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More irises.

Also new in the garden were people (yes, that’s plural!) for my birthday soiree. My sister, her boyfriend and dog and our best friends here in Seattle, Z and J and their beautiful little girl, A. With my husband, that’s 5.5 people and 3 dogs… And I did it! I was out in the garden, sitting up, listening to various voices and mixed conversations for THREE HOURS. How did I do it? I made it between the hours of 3pm and 6pm, my best times. I warned them (for the 700th time) that it had to be mellow, no big energy, no loud talking, no music. I asked them to bring their own drinks and food and totally took the burden of hosting off of me and my husband. I rested for hours before and after the gathering. I scheduled no appointments the day before or the day after. I made sure I had food in my stomach.

The weather was surprisingly lovely that day (surprising because the forecast said it would be overcast and cool). We sat at our garden table and munched on snacks and I watched from behind my sunglasses and listened… just took it all in. This was the first time having multiple people over in eight months and, the last time we tried this, I was in bad shape after half an hour, even though I hardly spoke.

I don’t remember much from my birthday. I had to ask my husband if everything went okay because I think I meditated myself into a state of Zen trance most of the time. I remember trying on the clothes my sister got me and I remember accidentally spilling boiling water on my dog’s back. I remember marveling at how beautiful and sweet little A is and loving my sister’s dog tearing around the garden (“zoomies”). Mostly I remember swimming in my loved ones’ company, listening to their chatter and laughter and feeling so lucky that they wanted to come see me and so grateful for every moment that I was able to participate.

I love getting older. Every year will be a celebration that I’m still here and I’m still living the best I can.

“I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I‘ve learned that making a “living” is not the same thing as making a “life.” I’ve learned that life sometimes gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
~Maya Angelou
R.I.P.

Lilac Wine

It’s ten in the morning and I’m sitting cross-legged and barefoot at our garden table in the warm sun, wearing a skimpy summer dress. My husband has created an oasis in the middle of the city. There is a fountain gurgling methodically and bird song all around me. I can hear children playing in the school yard a few blocks away and, every hour, the church bells chime the time. I close my eyes and I could be in Italy or France. I hear no airplanes or traffic. I’m sitting under a tall birch tree in April and, although I’m allergic, I’m having no problems. Lilac bows its scent over my head and, although synthetic perfumes now make me wince, I find the lilac’s aroma intoxicating.

If I were healthy again, I would do it all different. I would take the time to notice every bud and leaf, I would revel in meditation and have friends over all the time. I would visit farmers’ markets and experiment with recipes, host dinner parties and enjoy scrumptious desserts. I would take long walks with my dogs and listen to more music. I would never, ever take one minute of health for granted.

Today, I can’t stop smiling. I am outside, my body doesn’t hurt and I’m feeling pretty good. I’m getting stronger, I’m not lonely and the fears of the future have been sizzled away by the sun. We will undoubtedly have to leave this home eventually and, perhaps that will even be a good thing for my health, but, until that day, I will be grateful for the beauty wrapped around me, my family’s health, and for how fortunate I am.

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January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. :)

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.

Another Day in the Life.

Last weekend an old friend called to catch up after a few years. We had planned the day and time of the call, so I made sure I had the energy for it and didn’t have anything else scheduled that day besides a massage. After half an hour of talking to him (he is as energetic and animated and happy as I used to be), my voice began to get hoarse and the shakes started. I was lying down while talking to him ~ this is always easier ~ but I was outside in the sun, so I moved in to the blow-up mattress that is now in our living room, trying to quiet my system. We talked for another half hour and I wanted to keep going ~ we still had more to cover ~ but I could hear myself slurring and now my head was hurting and my ears were ringing and the internal tremors were so pronounced I think the phone was twitching against my ear. It was wonderful to talk to him. Catching up with family and friends is always good for my mood and fans the flames of life force… but, I knew it had taken too much out of me.

I spent the next few hours resting and then left for my massage. I was driving myself because the place is very close to our house and the last time I was there it wasn’t a problem as long as they put me in the ground floor room and I didn’t have to climb up the steep stairs to the second floor. I don’t get massages very often, but, when I do, I really love them. I ask her to “make my muscles feel like I went running without any of the energy expenditure or lactic acid build up” and somehow she does. It really helps my neck pain and headaches, too.

So, I arrive and realise I have to park across the street instead of directly outside the door because my appointment is later in the afternoon than usual and there is no parking between 4pm and 6pm. I am already running a little late because, after the talk with my friend, every little thing I did caused my heart rate to go too high and I had to move very slowly to keep it under 105 bpms. The chair in my car has a manual lever that you crank to raise it up. My husband is 6’2″; he has it at the lowest setting. I am 5’0″; I have it at the highest. Never before did I realise how many times you have to crank it to raise the seat up. Crank, crank…rest, breathe…crank, crank…rest, breathe…. The things I never knew about aging and injury and illness: I need an automatic car! I need automatic seat movers! I need a bathroom that doesn’t involve going up and down stairs!

[That last comment was off-topic because, the day after the massage, having made it to the garden but needing to drink a lot of water to continue to flush toxins and keep my BP up, I squatted in a corner of the shrubs to pee. You never heard that. Don’t tell anyone. But it saved me about 200 steps]

So, I parked across the street and it was another of those oh-shit-I-never-realised-the-gradient-was-so-steep-here moments. I walked very slowly and carefully ~ carrying my far-too-heavy purse ~ the few steps that brought me directly across from the door to the massage place. My heart was hammering, so I stopped there and waited. And waited and waited. Another bad thing about a later Friday appointment: there was WAY more traffic than usual.

Now, back in Ireland, there are crosswalks, but you certainly don’t need one to cross the road. It was like a game of Frogger: cars didn’t slow down and you bounced your way through lanes of traffic, working diagonally towards the place you were going so as not to waste precious time with right angles. We were quite skilled at it. I would get annoyed if a car slowed down when I was in the street because he/she was just messing with my timing and rhythm. I would wave them on: go, go, go… I have other lanes of traffic to sync my gait with… But here in Seattle? People are aghast if you don’t use a proper crosswalk with a proper green man telling you to properly proceed. Within a few years of being here, I had been given THREE jaywalking tickets ~ and the fines were hefty!

[Another quick aside: I was given the first ticket when I was 23 or 24. I had been heckled by someone outside a bar after closing and was walking home alone when I saw he was following me. I made a bee-line diagonally across the street to get to my apartment as fast as possible and, in the middle of the road, I felt a hand on my shoulder and wheeled around to hit it off of me, thinking it was the guy from outside the bar. It was a cop. He said, “You’re jaywalking. Don’t you answer when someone calls you?” I said, “No, it’s 2 in the morning, some creepster was following me, I was just trying to get home. I didn’t hear you.” He said, “Come with me” and motioned to the footpath back the way I had come. And then slooowly, smirkily and assholey, wrote me a ticket. I had been drinking and I was scared and I was pissed off. I said, “Jaywalking? Can’t you go catch some rapists or something?” And, I swear to god, his answer was: “Actually, there aren’t very many rapes around here.” I still get fired up thinking about it!]

SO, after waiting long minutes for the traffic to be clear in both directions, so I could slowly make my way across the street to the massage place, knowing I was now about 5 minutes late, I decided it wasn’t going to happen and I would have to cross the first side when it was clear and then weave through the cars stopped at the traffic light on the far side. But, when you have this illness, you can’t hop or skip or hurry your steps… you can’t really lift an arm to wave thank you. And the people in the cars looked at me like I was SO rude and one person raised their palms up as if to say “What the fuck?” and I realised the light had turned green and I was still doing my sloth-walk to the curb. I tried to look remorseful, I mouthed “I have this mitochondrial dysfunction and dysautonomia issues and weak muscles. I know I look able-bodied, but I’m not, please be patient” “sorry” to the driver. It was the longest walk across a road in my life.

Then I had to tackle the 5 steps up to the door (oh no, this is too much) and, when I walked in, the owner and my massage therapist were sitting in the waiting room – waiting. For me. I sat down. The owner (whom I know from my old life) said, “I was starting to get worried. You’re always early.” I burst into tears. I still hadn’t caught my breath and time was ticking away and I was embarrassed that parking across the street had caused me such problems.
“My heart rate… It took me longer than I anticipated to get across the street,” I said.
My massage therapist (who knows all about my illness) said, “To get to the crosswalk?”
I thought about the crosswalk 100 miles half a block away. “God no. I could never make it to the crosswalk.”
The owner said, “Next time you should park on the next street over.”
I said, “But that’s a lot more steps to walk.”
He halfway joked, “You need a Segway.”
I said, “I wouldn’t be able to stand.” Because, believe me, I have considered every option out there.

The three of us just sat there for a minute and I felt the panicky, trapped feeling I get every time I realise just how difficult every inch of the world can be and how ill-equipped society is to help. Every moment takes energy and every day needs to be so carefully thought out in advance. Nobody can understand this unless they live it.

Afterwards, my massage therapist surprised me by running out to get her car so she could DRIVE ME ACROSS THE STREET. I wish I had taken a photo ~ it was literally across the street and down a few car lengths. The gesture was so kind and generous after I had her now running about 15 minutes behind, that I didn’t bother telling her that walking uphill to her car idling in the alley and clambering into her tall SUV was as difficult as walking unaided back to my car on the downhill slope.

Gratitude for the day: for all the healthy people that go above and beyond to understand and accommodate and have compassion for people with disabilities.