Tag Archives: garden

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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 SHOULDER. Just 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

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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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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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Poisoning Myself.

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Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat allergic- and exercise-induced asthma. The oral version of Cromolyn has been used more recently to treat mastocytosis and mast cell disorders. It is a liquid that comes in ampules and is mixed into water. The doctor who prescribed it for me is the same one that diagnosed me with MCAS, but he didn’t seem to know much about Cromolyn. The pharmacy knew nothing. I had to go online and ask the people in my mast cell Facebook group for details and then call the pharmacist and explain exactly what the drug was. I am so thankful for the knowledge of these groups and Cromolyn seemed to help far more people than it harmed. It also seemed pretty innocuous — I only talked to a few people who had major side effects and they were things I don’t typically experience, like itching and nausea.

Of course, there’s always a part of me that is looking for the magic pill. Imagine I started this drug and my mast cells calmed down and symptoms I didn’t even realise were caused by them disappeared! … But, it still took me almost 5 months to convince myself to take it. It wasn’t until my bowels went into hibernation that I decided to take the plunge. A few weeks ago, motility stopped, gastroparesis reared its ugly, bloated head and everything ceased functioning in my intestines. No movement, not even a fart, and mega doses of magnesium and vitamin C weren’t doing anything. Cromolyn can help these internal inflammation symptoms and I had high hopes.

The dose I was meant to take was eight ampules in a day — two 4 times a day. The doctor never mentioned to work up slowly and some people in my online group were able to start at full dose. I wanted to be careful because we’re talking about my ridiculously hyper-sensitive body, after all, but I was pretty confident that I’d be fine. So, the first day, I took 1/3 of an ampule in the morning. The next day, I took 2/3 of an ampule in the morning. All seemed fine, so, that night before bed, I took 3/4 of an ampule. At 5 in the morning, I woke up sick sick sick. So sick. Sicker than I’ve been in years, maybe. Sick like my original sickness. Malarial. Encephalo-. Shaking all over, chilled, sweating feverishly, head pounding, stiff neck, muscles cramping, throat constricted, barely able to lift my arm or walk to the bathroom. Oh god, the FEAR. I’d rather die than go back to this. I felt like an ex-con in a movie choosing death-by-cop rather than go back to jail. My mind was like a panicked, caged animal, looking for a way out, falling in and out of fever dreams where I was screaming for my mother over and over again. I’d rather the “nightly flu” that I used to get. I’d rather the ME monster that slams me down with massive, pummeling hands, but I now know will release me eventually if I hold very still for a while. I think I’d even rather be back in December, 2013, when I called on all of you angels to get me through what I thought might be permanent bedboundness.

I felt poisoned. There’s no other way to describe it. I took my temperature: 98.4 degrees. My blood pressure was 80/55 (normal for me). My blood sugar was 80. Not much I could do but wait it out. I lay in bed the whole day yesterday, meditating, deep breathing away the fear of permanent relapse to an acceptable distance. I have a painful burn on my hand that is taking a while to heal and I kept falling into dreams where the burn was causing sepsis. That’s what it felt like — a systemic infection — I’d wake up panting and quiet my mind. I’m good at doing that during waking hours, but, in my dreams… I’m always silently screaming.

I feel a bit better today, but still didn’t sleep. I haven’t had a headache in a long time, believe it or not, and the pain is brutal. My muscles are aching and I feel swollen. The fear has dissipated to frustration. I’m frustrated with myself for trying another drug. I was doing so well. I had a lot of firsts the last few weeks (I’ll post about that later, but here’s a teaser: first time in a store, first road trip, first time on a beach in two years!) and then I couldn’t leave well enough alone and trust that my body was slowly, but surely, helping itself. I’m frustrated with myself for not going slower. I could have ramped up the dose over a full month, but I’m always so impatient. I’m frustrated that I’ve lost the potential help of Cromolyn. That was probably the worst reaction I’ve ever had apart from anaphylaxis, so I’ll never touch it again. I’m not even willing to try again going much slower, so I’ll never know if it could have helped. And that makes me frustrated because it was so hard to get it and it’s incredibly expensive and it’s such a waste. I have a friend who can take it off my hands, but, if I ever wanted to try it again, I’m out of luck because I don’t have insurance to cover it anymore.

And, in contrast to how I feel now, I realise how well I was doing. I was managing to do things every day — stand in the kitchen and cook for an hour, have conversations easier, wash and dry my hair without a thought. This weekend we have one last stab at summer — two days of high 70s and low 80s — and I was going to surprise our friends Z and J by going to their house on Vashon Island for the first time in years. I felt strong enough to do it and that was not even an option 6 months ago. Instead, I’ll barely be moving this weekend. But at least I’ll barely be moving in the garden, in the sun.