2016 Beach memories: Pictures worth 20,000 words.

Two years ago, I spent a few arduous days in L.A. with my mother and husband so I could have an appointment with Dr. Chia. Last year, we spent a few days on the Washington coast while I was very sick. We picked the closest coastal town to our house, so it was the shortest drive and my husband did all the work — I just had to get myself in and out of the car. I did it for the dogs, to see their joy on the beach, to try to make up for two and a half years of no adventures and lessened activity… but I was not in good shape.

This year, though… This year we took TWO TRIPS TO THE COAST. Again, all I had to do was pack (no easy feat — it takes me days) and get myself in the car. My angel husband, with good spirits, loads everything in and out and in and out of the car, including my mobility scooter, all my food, bedding, towels etc. I even brought my air purifier. I love being so low-maintenance.

Last June, was our longest trip since I got sick. We stayed in the same place in the same coastal town as we had in 2015, but I was feeling better than I had in years so, on the day we were meant to leave to go back to Seattle, we found a different rental and extended our visit for an extra two days. This new house was right on the beach and had a balcony. I had no idea the difference it would make to my experience. The first rental was further inland and had a fenced-in yard and trees enclosing the garden. It never occurred to me that a view might be nice — might even be soul-enlivening — I was just happy to see four different walls. But the simple act of gazing at an expanse of nature, even from inside a house, is everything when you’ve been housebound for a prolonged period. That first night, when I saw the vast black sky punctured with millions of bright stars, I started weeping. When was the last time I really saw the stars? I will never forget that moment. And the next day, sitting on the balcony, watching the waves… It didn’t even matter if I was feeling too ill to get to the beach. The funny thing was, I experienced none of that Oh-I-feel-so-much-better-near-the-ocean “locations effect” that so many people with ME report. If anything, I was taken down a notch by the wind, the marine smell, bonfire smoke at night, trying to manage my temperature fluctuations etc. Plus, there were, of course, a few difficulties for my sensitive system (a house on stilts that shook so violently, I couldn’t sleep, overwhelming bleach smell in the bathroom, strongly chlorinated tap water, too many stairs), but it was definitely worth it.

Over four months ago, I wrote a Love letter to my sons as a preamble to the big post I intended to write about the coast trip and then, of course, never got around to writing it. I’m struggling at the moment (this post has taken me a week to put together), so I’m going to let the photos do the talking.

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Half the house packed in the car, ready to go.

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ROAD TRIP!

This was the first night we arrived. A beautiful crescent moon welcomed us to the coast.

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Some days were overcast…

… with dramatic evenings.

Some days were glorious…

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…with breathtaking sunsets (taken from the balcony).

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The beach is exhausting. 😀

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The couple next door got married on the dune in front of our house. I wound up talking to them the day we left because I wanted to send them the photos I took and, in a bizarre coincidence, it turned out the bride had been suffering with a similar illness as mine, had tried many of the same treatments, knew all the same doctors. We both got tears in our eyes. It was a surprisingly beautiful thing to talk to someone so freely *in person, not on the internet*, without having to explain anything.

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The flag on the left is where they were wed.

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We had no plans to go again this year, but our best friends wound up renting the house next door to the one we had in June, so, at the beginning of this month and at the very last minute, we decided to join them. I’ve gotten worse the past few months, so I knew I wouldn’t be able to participate as much as I would like to (the first night they all played cards and had drinks, while I was in the other house, resting. The second night they had a bonfire on the beach, while I was inside, resting), but there were wonderful moments of normalcy: Z. chatting with me over morning tea, without the time-pressure of a planned visit; my dogs’ excitement when they saw Aunt Z. and Uncle J. on the beach — missed members of our extended pack; watching their family fly kites on the beach; colouring with sweet Anna while she talked my ear off more than she ever has before; eating dinner at a table with a group of friends, with conversation, laughing and music playing in the background (<~ this most of all: just hanging out amid all the normal sounds, feeling part of a group); and the social time my husband got, just hanging with friends he hasn’t seen properly in years.

The only downside was my dogs are showing their age much more now than they were even four months earlier. I couldn’t use my scooter as much as last time because they simply didn’t have the stamina to walk distances and were both limping after our first short excursion. The last — and warmest — day, Bowie didn’t even get out of the car for more than a minute. He was pooped. And Riley just sat next to me like a sentry, wondering why I was lying on the sand. I fear it really might have been the last hurrah on the beach, which makes me even happier that I pushed myself to go and create new memories.

The boys were thrilled to be back!

Our best friends frolicking. 🙂

Bowie and sweet Anna flying a kite.

One day was dark and brooding and that night it stormed with 50 mph winds.

Another day was sunny and clear.

 

Small steps with payback… But new memories and happy dogs are everything.

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March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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Happy Birthday To Me!

Today, I turn 40 years of age. We have a big day planned. We’re going to the beach with the dogs. We’re going to throw the ball and walk in the sand and let them chase birds. They haven’t been to the beach since last summer when E. was visiting and I still had some energy.

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I’m not going to go to bed afterward. Instead, I’m going to stop by the grocery store and buy all the fixin’s for a fry tomorrow morning: eggs, bacon, sausages, bread, tomato, proper cow’s milk for proper tea… I might even look for decent baked beans and black pudding. Then, this evening, I am going to take a shower, wash my hair and put on make up for the first time in 9 months (gasp!). I am going to put on a dress ~ it is beautiful and still fits me and I feel sexy ~ and some very high heels ~ I’m able to walk in them properly, without shuffling, and they don’t hurt my back. We’re going into town for dinner, meeting up with friends and family. It’s going to be a long 5-course indulgence and I’m going to ignore all my diet rules. I am going to rip apart fresh-baked bread, taking the time to inhale its aroma before slathering on creamy butter and savouring every bite. I am going to close my eyes every time I take a bite of pasta ~ I don’t care what kind it is ~ and be fully present in that moment, witnessing every chew with all my senses on full-alert. I am going to order the most decadent dessert, something with pastry and chocolate ~ eggs, sugar, flour, butter ~ and revel in every single mouthful: no guilt, no worry, no blood sugar issues, no inflammation issues, no intolerances or allergies or leaky gut or bowel dysbiosis or nausea. There better be a cheese plate involved at some stage and I might even have some wine. Dry red wine. A whole bottle. Maybe I’ll sneak outside to share a cigarette with someone. We’re all going to talk over each other and laugh hysterically and the noise won’t bother me. I won’t be confused and overloaded by too many conversations at once. I won’t think about pain or exhaustion or how I will sleep tonight or how I will feel tomorrow. Because I will feel fine. I will feel tired and happy and full and grateful. Oh, and tomorrow morning, while eating that lovely breakfast, I will realise I’ve won the $600 million lotto.

Well, a girl can dream, right?

No, unfortunately, today will be like every other day. It’ll be a little bit worse than the norm because my sleep vanished this week and I’m crippled with new muscle pain on top of the old stiff exhaustion. But, it’ll be a little bit better than the norm because my sister is coming over and my husband isn’t working. Three people and three dogs? It’ll be a carnival compared to my usual still, silent days.

Goodbye 30s, you actually were literally the best of times and the worst of times. I have three birthday wishes for this new decade: Continued good health for those I love, better health for me and relief from suffering for all people and animals on this earth. That’s not too much to ask, is it? 🙂

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May 18th, 1973