New In The Garden

Addendum to my last post:
So, of course duh, I’m not getting some brilliant deal on Human Growth Hormone. $138/month is based on $23/mg for 0.2mg/day. I just talked to the nurse and she said kids who are very deficient can inject 20 times the amount I’m getting, which, of course, would be thousands of dollars a month. So, it gets more expensive as they raise my dose. Wah waah. My mother also told me that a doctor suggested I might need HGH when I was a young teen, but it was never pursued. I kind of wish I had been tested back then since I wasn’t on a normal growth curve and it might have helped not only my short stature (not going to lie, life would be a bit easier with a few more inches), but also things like early-onset osteopenia. Regardless, even now, it can not only help my fatigue and pain, but also absorption of nutrients and building of muscle, so I’m (very cautiously) hopeful.

Addendum #2:
The nurse just called me and said it looks like the HGH is going to be $1,500/month, not $138. Soooo… Yeah, it was too good to be true.

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The sun shone for the first time in what feels like decades and the boys and I walked creekily into the back garden, blinking against the brightness like caged animals released into the wild for the first time. Things are beginning to bloom. O frabjous day, callooh callaay!

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Riley is thrilled that his Mama is outside.

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Blue skies and cherry blossoms!

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These flowers smell incredible!

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Resurrection.

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Even Bowie, who never goes outside, poked around for a bit.

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A few days ago, there was a brilliant double rainbow and, evidently, the pot of gold is in our garden shed!!!

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The Locations Effect*

Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on once in the last six months. This is something I am so reluctant to write about because it causes me such terror and grief. More for my husband than myself. If this climate, this city, this house is making me sick, I would move. I could make that decision today. When you lose your career and your social life, become housebound and fear death, there is nothing that seems too drastic or impossible. I’ve been too sick to go anywhere, see people, call family, read books, so what do I care if I have to leave the place I have called home for 19 years? Well, I do care, of course. I have been too immobilized by fear all this time to even consider it, let alone talk about it, let alone do it!

But, the most difficult part for me is that the hardship falls on my husband. He is the one that would have to sell things, pack things, clean things. He is the one with hard-won seasonal landscaping clients. He is the one that has poured his heart and soul into this home, tearing down walls and building bathrooms, replacing piping and electrical, building porches, patios, vegetable beds and fences, tearing out the furnace and installing under-floor heating, slugging through the crawlspace and sweating around the attic, replacing every shred of insulation that was infested by rats when we first moved in.

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He is the one that has spent 8 long years growing this garden oasis. Every single day that he doesn’t work — summer or winter — he has been in the garden doing whatever it is that people who love landscaping and plants do. The trees he has planted are glorious and you all know the fireworks show of flowers that I have documented here.

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He has done work-trade for plants and materials, used reclaimed stones and bricks to build paths and retaining walls… he has mulched and pruned and dug and mowed every day for 8 years and, until recently, I could never see the art that he knew would reveal itself. While I was confused by his choices, he could see the future colourful landscape and, one day, there it was… Ooohhh, that’s why you cut back that hedge so aggressively! Ooohh, all that green actually blooms eventually! That’s why you put that tree there! There was a reason for every brush stroke, only it took years to see the full painting. And we thought we’d have forever to enjoy it. My heart aches for him more than anything — that he might have to walk away from his slowly-created and lovingly-tended artwork.

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I know how lucky I am. I know I’m lucky to have a husband who takes care of me. I know I’m lucky to have had this home and to have had some savings. I know I’m lucky to have possessions in the first place to be able to sell. I could have started off from a much less stable position, without family support. But it doesn’t make it any easier. I don’t want to leave this house. My husband and I said our vows in the back garden. But, it is an inevitability because of loss of income. Leaving Seattle entirely is a different matter.

I have never taken Seattle for granted. Every year I am grateful that I don’t live with crushing heat and air conditioning… we don’t have freezing storms, frozen pipes, snow drifts, hurricanes or tornadoes…. don’t have to worry about mosquitoes, biting bugs, fire ants, huge spiders… I love all our doors and windows open 5 months a year and never having to think about insect repellent or ticks or West Nile virus…. I love the mountains and Puget Sound, the abundance of good food, farmers’ markets, clean water… I love the laidbackness and the passion of the people here… the music, art and theatre here… the politics, universities, the companies that make their homes here… I don’t want to live anywhere else in America…. But… what if?

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Recently, Jen Brea, who is making the film Canary in a Coalmine, had some remission of her symptoms in Utah. I looked up today’s temperature and humidity in Salt Lake City and it is 88 degrees and 24% humidity. Here in Seattle, it is 61 degrees and 63%. Dublin, Ireland is about the same. My whole life I have lived in this climate and I need to test something different. I want to not only test a different house, but different air. If I could, I would travel to the Carribean or Europe, but the reality is, if I can be healthier in, say, Winnemucca Nevada, shouldn’t I go there? Can I separate living from all the things I thought equaled living? If I have no friends, no dogs, no home, no job, no possessions, but I’m not (as) sick, is it worth it? If I’m healthier, but I have no access to community because I’m living so remotely, can I be happy?

I can’t even begin to describe the lives of extreme mold avoiders. I have delved into that world for about six months now — watching videos, reading blogs and articles, listening to discussions in Facebook groups — it is harrowing and heartbreaking. No one can comprehend the pared-down, nomadic lives that people lead, leaving everything and everyone behind to travel the country looking for a safe place to sleep, their few possessions in garbage bags. Putting down shallow roots until something goes wrong — water intrusion, insecticide spraying, air quality changes — and then having to move on again to the next motel, campsite or friend’s driveway. I don’t know how they find the strength. But, my first step has to be getting out of here and testing how I do somewhere else. Part of me is hopeful and excited that it might make a difference and part of me thinks our little family will never survive such upheaval and I’ll somehow have to go it alone. As it stands now, I have to figure out where to go, when to go and who will take care of me until I can take care of myself. Gratitude pours from every fiber of my being for those of you that have offered to travel with me and help this quest: friends, siblings, parents and dear husband, I wouldn’t have a chance without you.

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*The Locations Effect is the name of an online forum and Facebook group started by Lisa Petrison to report “on places where people have experienced improvement in chronic neuroimmune health conditions.” She is also executive director of Paradigm Change, a “not-for-profit organization with a primary goal of encouraging the exploration of the hypothesis that certain diseases involving the neurological and immune systems may be ones of toxicity.”

 

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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