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 Good

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Yesterday was bad. Like I said, the last three months have been a roller coaster of really bad days punctuated, thankfully, by some respite. Last week on Friday, I was almost as sick as I was yesterday, lying in the same bed, looking out the same window, feeling the same despondency. But I woke up on Saturday feeling so much better. In my healthy life, I couldn’t have believed how quickly an illness could change. You really can be talking about ending it all one day and laughing with your dogs the next. It makes it seem a bit girl-who-cried-wolf, but it’s not, I promise. The bad is that bad and the good, although not that good, is so extremely, completely, acutely appreciated.

So last Saturday… It was freezing, but blue skies and sunny. I’d been inside for weeks and I was feeling very “I’m out of bed! Hello? I feel better! Anyone there? Quick, someone take me somewhere!” My husband was out with friends, my mother and aunt were eating Italian food in a restaurant in Dublin, my best friend was having dinner in our friends’ house in Dublin, my sister was on the town in Paris… I told myself, You were so sick yesterday, you just need to rest , but everyone was doing fun things and I wanted to, too, dammit! So I loaded my dogs into the car and drove (for the first time in months) to the dog park. We only stayed half an hour and I was on alert the whole time, knowing that if they got into an altercation, I would destroy myself breaking it up, but… I did it. And chatted to TWO people. It was great. Here’s evidence:

The next day… I still felt okay! So we went to my favourite place, the cemetery. I rode my scooter and my husband cycled my his bike and the boys ran and ran with big grins on their faces. My nose was running and my fingers were bloodless and numb, but it was so sorely needed. Here are a selection of cemetery shots from the last four months:

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Bowie in August.

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Riley in September.

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Bowie in September.

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Bowie in October.

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Boys in October.

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SQUIRREL!!

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Bowie in November.

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Bowie in November at dusk.

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Riley in November at dusk (he usually moves too fast for me to get a photo of him).

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Bowie in December.

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Where’s Daddy going?

I couldn’t leave this blog festering in the bad of yesterday. My friends are so caring and feel so deeply — thank you to those that have left me messages of support. It means a great deal that you can still offer compassion after all this time.

June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

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But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

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Oh, Christmas Tree. Oh, Christmas Tree…

We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to spend at a nearby Christmas tree lot and then I realised… we probably shouldn’t get a real tree this year. I am reacting to everything lately and I’ve been bothered by the small tree in my meditation room and the soil it sits in. Last Christmas was the lowest point in my ME journey so far and I’ve gone downhill since the summer, so I really don’t want to aggravate things by having a smelly, potentially moldy tree in the house for a month (most asthma and allergy sites I looked at recommended against a real tree). I even asked in my MCAD group and the vast majority of those that answered get a fake tree.

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So, we bought a fat 7.5′-tall artificial tree from my friend for $150. He said it was used once and kept in a back bedroom all year. My husband opened it up and we let it sit and air out on the porch for 5 days and then he moved furniture and broke his back bringing it inside, setting it up, and tweaking every branch and twig for an hour to make it full and beautiful. When I came through my vapour barrier from upstairs, before I’d even looked into the room and seen it was up, I knew the tree was there. It was like walking into a wall of smell. I couldn’t identify the smell. It wasn’t a plastic smell and it didn’t smell like dust or manufacturing stench, but it was a very large smell. I’d go into the kitchen to get something to eat and, as I walked back into the sitting room, I would stop short as I hit that fetor again. Over and over, the heaviness of it took me by surprise. My throat was burning, I got headachy… Normal issues for me, yes, but I felt like it was the tree. Or, at least, having those symptoms while being enveloped in that smell, correlated them in my brain. To add insult to injury, it is a really high quality, pre-lighted tree and the lights are SO INCREDIBLY BRIGHT in our small room, that it hurts both of our eyes and leaves spots in front of our vision. I thought bright lights were a selling point, but not in my world, of course. Central immune system sensitization is like an evil super power.

My husband, stony-faced, took it back outside while I apologised profusely for my fucked up body and my inability to do any of the heavy lifting. The guilt can be all-consuming.

I spent the next three hours shopping online for hypoallergenic artificial trees or green/healthy trees to no avail. Then I went on Ebay to look for metal trees and found these two for $100:

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Scentless (hopefully), washable… I started to get hopeful again that there could be something pretty to hang our ornaments on and create a festive feeling. I emailed them to my husband, bothered him at work to take off his rain gear (he’s a landscaper in Seattle) and look at the links (he hated the scroll one, but thought we might be able to do something with the spiral one)…

But then I found these metal trees on a different site:

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Twice as much, but maybe a good investment? I texted my husband again. There are no gold spiral ones left and only 2 black ones! We have to hurry to make a decision! Then I realised that they didn’t even guarantee Christmas delivery. So, best case scenario, we’d get it a few days before Christmas, which just doesn’t seem worth it when the whole pretty and festive lead-up to the day is what I enjoy (plus, it takes me weeks to decorate a tree with my energy level — a few ornaments a day) and, worst case scenario, it’d arrive after Christmas and be useless to us this year… and then probably go on sale in January.

I told my husband forget it, we’re shit out of luck.

Theeenn… I checked my emails. Somehow, while shopping for trees on my phone in my bed at 1am last night, my finger had hit “one click ordering” on Amazon (a really evil option that doesn’t bring you to a different screen to look at your shopping cart or confirm your selection, it just orders it — in “one click”) and we have an artificial “pencil” tree coming in the mail. I emailed the sellers because it said it hadn’t been sent yet: “Accidental order! Please cancel!” They answered that it couldn’t be cancelled and we’d have to pay to return it. To add insult to injury again, it’s not even on Amazon Prime and won’t get here until December 20th. And, of course, it’ll probably smell. And it’s made in China. So, we’re out $320 and our porch will be crowded with fake trees and, even if I manage to sell them on Craig’s List, my husband will be the one who has to deal with moving the trees, meeting the buyers etc. I honestly feel like I could take this all in stride, have fun getting creative and see the lighter side of this, except I’m just so guilty that my husband has to do all the work!

My new plan is this. I’m sure my landscaper hubby has a tall ladder:

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Addendum: Just as I was about to hit publish on this blog post, my husband called me and said, “I’m in Home Depot. The artificial trees are all $300+ and most have fake scented pine cones. I’m standing in front of the tomato cages. They’re 5′ tall and cost $3.97.” Hahaha! Hell yes! I had sent him this photo as a joke:

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We both laughed at the fact that we are going to have a wire tree that cost $3.97 and now I think this will actually be really ridiculous and fun. Happy Christmas! 🙂

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.”

 

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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