Love letter to my sons.

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After more than 10 months, I got away from the house. Every time I look at the grey in my dogs’ muzzles, I have a panic about time slipping by and the knowledge that Bowie is hurtling towards end of life. He is 9 and Rhodesian ridgebacks typically live 10 to 12 years. Bowie is big — the tallest ridgeback I’ve encountered in the flesh or online — I fear he’s more like a small great dane and they typically live 6 to 8 years… So, I’m bracing myself. Truth be told, I’ve been bracing myself for their ends-of-life since they were kids.

Riley was originally found emaciated to the point that he couldn’t stand up and had already been in two foster homes before coming to us. We were meant to be a foster home, too, but, after he was placed with two more families that didn’t work out (and my emotional meltdown with each goodbye), we knew he was meant to be ours. And, wow, was he meant to be ours. I don’t think any other pack would have worked so perfectly. He almost died from some gastrointestinal awfulness soon after we adopted him. I watched him lie on his side, dead-eyed, weakly vomiting blood while the vet told me he thought he might not make it. Not long after that, Bowie hurt his back at the park and I lifted his 110lbs into the car with some sort of super-human mother strength and raced to the emergency vet. I was healthy then, but, still, that’s more than I weigh.
[NB: Of course I called the clinic to verify his weight at that visit.]
[NB: Of course I made sure they weren’t busy before I bothered them with that question.]

So, losing them has been at the forefront of my mind for most of their lives. It may sound morbid, but it makes me appreciate every day that they’re here and I never take a moment for granted. I will miss this hair one day, I think as I pull it out of every meal I eat. I will miss his drool one day, I say as I almost brain myself slipping in the saliva pool on the kitchen floor. I spend an inordinate amount of time cuddling them, memorising every curve and bump of their bodies, making sure I’m always conscious and grateful for their presence.

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I will never forget the first time I took a mobility scooter to the cemetery for a “walk” with Bowie (at the time, I didn’t trust Riley to stay close off-leash, so he went to doggy daycare instead). We had been visiting the cemetery since Bowie was a puppy, but it had been a year since I was housebound and that first year was the longest and sickest of my illness. He lept like a puppy when we got there and I wept as I watched him. I think it was as important for him to see me out as it was for me to be out. Last year, both of my dogs’ mobility declined sharply. Riley is arthritic and Bowie is an old, creaky man. My number 2 wish (after getting better) is to fill their time with as much fun as possible. If I could, I would take them someplace different every day, wear them out, introduce them to novel smells and new friends (every time I’m flabbergasted or frustrated by my acute sense of smell, I think what the world must be like for a dog whose nose is tens of thousands of times as sensitive as a human’s. While a dog’s brain is only 1/10 the size of a human brain, the part that controls smell is 40 times larger. Can you fathom that even slightly? Whenever I see someone yanking on a dog’s leash, I think, imagine what he is smelling down there! Give him a minute!).

My dogs are my kids, my caretakers, my comedy, my inspiration, my reason for pushing myself, my main source of joy.

So, this is all a big preamble (pre-ramble, more like) to the story of our recent road trip to the coast (in a future post) and why it was so important to me. I can’t fly with my dogs to India or Africa or even to different parks very often, but once a year for the last 3 years, we’ve made it to the seaside. This time was different, though. This time I was stronger, I wasn’t as crushed by poisoned pain and my husband and I were happier, not desperately grappling for handfuls of different memories within the blind freefall of sudden severe illness survival. Because that’s what it has felt like: an initial period of confusion, fear and searching, followed by 3+ light-speed years of gasping for air and kicking like mad to keep our heads above water, learning how to navigate this life. And in all that time, it’s felt like we both had faces bowed down in grimaces of pain or duty, grief or worry, eyes meeting fleetingly, but blinded by our separate burdens. So, I remember those previous journeys to the ocean as a bit desperate, slightly lonely and only partially successful. But this time was different. Not easy, not perfect, but more like real life. Like a life where I’m totally present with my husband and easily walking the beach with my sons. I’ll get there one day.

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This Year: Life, the Universe and Everything.

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Even though I’ve been wiped out for this entire week afterwards, my birthday outing was worth it. The day before, I had found a third-hand mobility scooter (at a third of the price) on Craigslist. I have been looking for one that could handle rough dog park terrain (big wheels, decent suspension, strong motor), but could still be dismantled and put in a car (ie: not the fun Harley-esque one I had my eye on, similar to my friend Jak’s). My husband drove two hours round trip to buy it and I was able to take it to my favourite off-leash dog park: 40 acres of trails, fields and river access.

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The weather was sublime. Actually, that was the only blip in our day: as soon as I arrived, I had to park in the shade, strip off two layers of shirts and have my husband reach up my yoga pants to peel off my compression stockings. Plus, I was drinking hot chicken soup. I was kicking myself for not bringing sunscreen. But, after that, all was well, if a little harsh and bumpy on my bones. This 4-day payback headache I have is probably from jostling my spine on the gravel and mulch (and I won’t mention the horrible nausea that hit me at 10pm and the relentless barrage of nightmares that followed that night because this is meant to be a happy post).

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Big smiles. 🙂

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I couldn’t get a photo, but there were huge blue herons flying into the nests and babies up in the trees.

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My boys playing with a new friend.

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That evening, my sister and her boyfriend came over and she suggested getting take away food from a nearby restaurant, which I hadn’t even considered. So, we ate dinner at the table (as opposed to my usual on the couch with my feet up, reclined) and I had a delicious beef tenderloin and coconut rice. They accidentally put some Gorgonzola on my steak and, oops, I forgot to scrape it off. That was a celebratory taste explosion that I haven’t encountered in 2.5 years.

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“The hills are alive….” Pretend I’m spinning…

Then, to top everything off, two days later, I got a visit from my dear friend, Z. She came bearing flowers and a bag of gifts for me to open and, the best part, her little girl, whom I consider a niece. Baby A chatted away, which is all new! The last time I saw her she hadn’t quite found her words around me. What a treat.

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42, the answer to the Ultimate Question of Life, the Universe and Everything.
It’s going to be a good year. I have faith.

Kinda.

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May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

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Emboldened and Emblazoned

Emboldened by my moderately successful drive to the nutritionist, I decided I could drive myself to the sleep doctor’s office on Monday, which is only a little bit farther away. I was there for the hundredth time to fit my oral appliance for sleep apnea. It has now been a year-long debacle and I’m pretty sure I’m going to have to find a completely different brand and a completely different dentist and start over. That also means it will cost me $850+ instead of the $0 that the current device was going to be because the clinic wrote off the cost to me after the first three mess-ups.

I brought a thank you card and some fancy chocolate to the orthodontist because, the last time she saw me, I was literally being carried out of the office by my husband, unable to speak and having a total body meltdown, after being there 2.5 hours. It was mortifying, and she’s always been considerate of my illness and empathetic, so I wanted to thank her for following through. She burst into tears. And I mean burst. She didn’t just tear up, she started crying so hard, she couldn’t speak. That made me wish I’d given her a far nicer gift. She said (when she regained composure) that it meant so much and she knew how hard it had been on me and I’d stayed nice throughout the process… It’s true, I did stay nice because I love my sleep doctor and, really, it’s a bad product, not a bad clinic, but they wrote off the cost because I made it clear to the clinic manager that that was the appropriate thing to do. I also made it clear, in writing, that the problem was not with me and had nothing to do with my illness or my anatomy. And I’ve started the conversation about getting help with the preauthorisation for some different type of device from a different clinic. I don’t think it’ll work, but I’m politely yet firmly letting them know that this was their problem and I shouldn’t have to pay full price for another mold to be made. But let the orthodontist think I am all peaches and cream. 🙂

Anyway, on Monday I was going back for a final fitting and it was 1.5 hours again of putting the thing in my mouth, grinding down the pressure points, spraying awful green chemical crap in the mouth piece, putting it in, clenching my jaw, pointing out where it’s hitting my teeth… on and on, over and over… That process takes so much out of me and hurts my neck and my jaw and rips up my lips. Plus, I had a horrible hypoglycemic episode and had to eat red dye #2 glucose tablets. Ugh.

When we were done, I couldn’t drive home – the world was spinning and my ears were screaming and my vision was blurry. I called my husband for rescue. He and his friend that he works with came to collect me and the car, god love them. I lay down on the concrete slab outside the clinic to rest while I waited. A 40-year old kicked back on the concrete in front of a sleep clinic in a sort of urban strip mall didn’t seem quite as acceptable as a similar sight when I was 20, lying on the concrete steps of a university building, writing poetry, feeling beatnik. But, oh well. I’ve laid down on restaurant floors and airplane aisles; I have no more qualms.

The sunny silver lining was: it was summer that day. One day of crazy heat. I took off my big duffle coat and then my sweatshirt and then my scarf and then my long-sleeved shirt and, by the time my husband arrived, I was in a tank top, baking myself, in deep meditation.

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The other great things from this week:
A long visit with Z. and sweet baby Aja (who is not such a baby anymore!).

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Baby Aja hanging with the Little Guy. 🙂

And I made it to the cemetery on my mobility scooter for a 40-minute “walk”, with beautiful spring coming to life everywhere I looked.

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In The Garden This Week

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Spinach and Kale and Chard, oh my!

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Harvest Moon out my window

The Summer of Spiders

The Summer of Spiders

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New fence…

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…courtesy of my husband.

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My Momma!

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Bee rock to go with the ladybug rock ~ from my nieces. 🙂

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Beautiful Baby A. (Z. and J.’s little girl)

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Last of the Seattle Summer Sun

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AUTUMN!!

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imageMy very own SCOOTER! Stay tuned for a post on the exciting story of how this came into my possession. 🙂

Oh, Happiness is Happening

After the exhausting week that I visited the Good Doctor and had my traumatic trip to the massage, I emailed my family and close friends and said that I wasn’t going to talk on the phone or skype for a few weeks in order to rest up for and recover from my father’s visit. I cancelled all appointments, also. It wound up being 18 days with no human interaction other than my husband and the 4 days with my father and sister here. After such a long quiet spell, I didn’t feel any better physically, unfortunately, but it was freeing to not have to go to counseling or a doctor or physical therapy… the incessant quest for healing is quite exhausting.

During that time, I put away the heavy ME/CFS books and inhaled David Sedaris’s “When You Are Engulfed in Flames” like it was fresh, mountain air (note to people with ME: he writes in short, easy to digest, hilarious vignettes ~ highly recommended for our brains). I injected some music into my daily rotation of meditations, visualizations, brain wave CDs etc. One day, I listened to every Radiohead album in chronological order (bar the very first and the most recent, neither of which I own).

Those schedule-less days helped me prioritize pleasurable activities (reading) over obligations (appointments), which is a very hard thing to do. After the necessities (getting dressed, brushing teeth, putting on sun creme, preparing food, walking up and down stairs to the toilet, a few emails or bills), there is very limited extra energy and it is hard to put it towards a happy activity when the kitchen is a mess and you’ve no clean clothes. I even see my rest times and meditations as obligations. They can be pleasurable, but who wouldn’t rather be chatting with friends, watching a good film or even blogging? For a long time, I had one phone conversation planned a day, but it was too much. Although talking on the phone is pleasurable, it usually precludes all other activities, so I had to reassess. I want so desperately to be a good friend ~ to have some sort of interaction with people that goes beyond their reading about my illness on the internet ~ and I wonder, if I go dark, will I still be welcome back one day?

During this period of reassessment-of-activities, I read Jackie’s post on LethargicSmiles. She articulated this problem perfectly. Her doctor told her to do something pleasurable every day to aid recovery and healing. Jackie writes, “It feels wrong to ask someone to come do my laundry when I was able to go to a park for awhile that day…” I’m a bit more limited than she is, I think, but it’s even difficult to watch tv while your husband fetches you water, so we all have to work at feeling less guilty and asking for help more.

With this in mind, I took a leap of faith on Monday. All year I’ve pined for the days that I used to take my first-born pup, Bowie, for walks in the cemetery. It was our private, quiet time together. As you all know, he is very sensitive and has been severely affected by my ME. He is depressed and nervous and doesn’t understand why the happy pack that went to the beach and the park all the time is now indoors, stressed, sad, scared and sedentary.

Monday, I was going to skype with my Mother and then my sister was to come over in the evening. When my husband wound up taking the day off and offered to rent a mobility scooter and take us to the cemetery, I hemmed and hawed. No, I have plans tonight… I’m about to talk to my Mum… My heart rate is high today… What if the effort of it makes me worse?… We can’t afford it… And then I thought about doing things that make you happy. This would make me happier than pretty much anything else.

Our smaller dog can’t walk off-leash. If he sees a squirrel, the rest of the world doesn’t exist. He would run across highways and through rivers and over mountains and across deserts to catch a critter. And god forbid I leave him at home feeling abandoned or my husband holds him on a leash while Bowie gets to run free. Luckily, the doggy daycare is adjacent to the cemetery and charges by the quarter hour, with no reservation -and the Little Guy loves it. So, we dropped him off and my husband assembled the scooter and … Bowie and I got to go for a walk for the first time in 11 months.

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Weekly scooter rental: $160
Doggy daycare: $5
“Walking” with my baby: Priceless

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