Tag Archives: dog

by

On The Road Again!

I haven’t had spare anything (time, energy, bandwidth) in about 20 weeks. Wow, 5 months — for this long, it’s been one event after another. And January through March was a haze of bare-survival after my husband’s knee replacement surgery and the resulting toll on my body. (His body bounced back pretty well, thankfully.)

In April, before our trip to Joshua Tree, it was weeks of careful packing, plus dealing with repeated dental visits (a successful amalgam removal and crown placement sans anesthetic).

We were gone almost 6 weeks for the California trip and it was not a good time for various reasons that I will one day write about. Mostly hell from constant colon crises.

Right after we got home, my Mum came to visit from Ireland for 6 weeks and I tried to focus all of my extra energy on her. It was wonderful and sorely needed.

As soon as she left, my Dad came to visit — also wonderful and sorely needed, as I hadn’t seen him in the flesh in 4 years — but it was more taxing than I anticipated because it was only 5 days, so, in order to see him and my sister as much as I wanted to, I had to rearrange my usual careful schedule.

Then, as soon as he left, we started packing to get back on the road again to Salt Lake City to see Dr. Pace and Dr. Maitland.

This is why my lengthy to-try list of medications never happens. This is why I haven’t gotten IVIG infusions back on schedule. There hasn’t been any time in the last 5 months that I wanted to risk terrible side effects.In Joshua Tree, even though I brought a suitcase of supplies, thinking it’d be an ideal time to try things and get infusions back because my husband was there with me every day, he explicitly asked me not to do anything different that could make things worse. It was a bad month.

Friends may remember that back in June we were in Vegas in 110° heat, on the way to the Metrodora institute in Utah and, due to unstable health issues, we decided to turn around and go back the way we came to get home to Seattle as quickly as possible. I loved arriving home. I NEVER love arriving home. Seattle has been wonderful this summer, especially after the desert magic was so diminished for me this year.

So, now we’re again on the road to the Metrodora institute and, the upside of everything is, back in June, we were going to be paying out of pocket to see Dr. Laura Pace (a neurogastroenterologist who *might* be able to help with my complex bowel-dysautonomia issues – see here and here), but between then and now, they’ve joined my insurance and all of the providers at the clinic are covered, so I’m seeing Dr. Anne Maitland, too (a mast cell specialist – see here and here) and anyone else they want to throw my way.

I am keeping my expectations low for these appointments because I’ve heard some not-great stories (mainly due to disorganization), but I’m also trying to keep an open mind. It’s much easier to do this knowing I won’t be paying thousands of dollars.

Our 25th anniversary is in a few weeks, so we’re trying to pretend that it doesn’t matter if the doctors are a crushing disappointment because we’re on a celebratory holiday. Woohoo fun!… Even though I’m nervous of what the SLC elevation might do to me + it’s currently 100° out + it’s all work and no play for my husband + I can barely walk + Penny has an abscessed carnassial molar and is on meds to get her through to surgery…
But ANNIVERSARY ROAD TRIP! 🥳🥳🥳

by

Our Little Guy, Riley

Riley is sick. Really sick. He’s going to die soon.

I’ve been dealing with excruciating abdominal pain — mostly bowel hell and random pelvic floor muscle spasms that cause scary vasovagal HR and BP issues.

Yesterday, I was so beat down from the untreatable and unpredictable and relentless abdominal pain, I said to my husband that I just wanted it all excised: hysterectomy, oophorectomy, proctocolectomy, cystectomy… just take it all… And then I had new deep, low cramping start on top of the usual; I was sitting silently in pain and fear, unable to identify the organ, not knowing how it would progress. It felt remotely like menstrual aches, but I haven’t had proper cramps in years and haven’t had my period in months.

After I went to the loo and saw some spotting, relief hit me like a tsunami. I came out and sat at the top of the stairs and sobbed with happiness that there was a REASON for this pain. The emotion was so raw and honest, I couldn’t control it. Just utter relief that I knew why and what it was and I knew it would leave.

Riley, hardly able to walk, one foot out life’s door, somehow through his deafness heard me crying and staggered up the stairs to lean his full emaciated weight against me. As he’s done for 12 years, but especially the last 9 years of my illness. Tuned in to my every emotion, pawing at me, licking my face, barking and playing with toys to distract me, and lying on the end of my bed day after day for the years when I didn’t have the ability to leave it much.

Even as we try to save his life, he is still trying to save mine.

by

First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

by

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: 

image

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: !!!!

IMG_20160331_212124

“Ducks, ducks, ducks, gotta get the ducks.”

IMG_20160331_195133

“Don’t make me go out in that sun, Mama.”

IMG_20160331_191649

“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. 😊

IMG_20160401_174905

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

by

“Bad harvest, bad harvest!”

I’ve been hijacked by head pain. I’ve lost 10 days. I really would like to believe that superstition is meaningless, but it is quite astounding how every time I take a chance on sharing good news, I get walloped. I waited 5 weeks to write my last post — until I was sure this small uptick was lasting — and I was so excited to share a positive update with my family and readers for a change…. And don’t tell me it’s a self-fulfilling prophecy because it’s not. I didn’t fear jinxing myself so much that I manifested this pain. Once I wrote the post, I got on with my life with renewed hope.

Friday the 29th, I was dragging and it felt like I was coming down with something. Saturday the migraine hit in earnest and I’ve been crippled ever since besides a random afternoon of respite this past Saturday when my friend Z and her daughter were visiting (and Z commented on how much more I was able to engage since the last time she visited (there I go broadcasting improvement again)).

image

Bowie loves baby A (who isn’t really a baby anymore).

I heedlessly declared “It’s gone! It’s gone!” and, that night at 4 in the morning, I started to get a migraine aura — those jagged, moving silver lines that blot out your vision in certain spots. It was like the migraine slept, regained some energy and came back with renewed determination. Yesterday and today, I’ve been in tears.

I’ve tried all my tricks (caffeine, feverfew tea, cervical spine stretcher, ice, heat, acupressure, extreme hydration, fresh air etc.), but this isn’t one of my normal chronic headaches. I feel it moving around in the morning, when I bend over the pain explodes, my neck hurts, I’m sleeping more, but it’s not helping and I have horrific nightmares every night. I thought it was hormonal, but my period came and went and the head pain got worse, if anything. I thought it was because I increased my probiotic or was eating a lot of cottage cheese, but I’ve stopped both for days. I finally risked buying a mattress topper: it’s natural Dunlop latex and had hardly any smell at all, but it seems the most obvious culprit. I took it out of my bedroom a week ago, though.

I’m starting my Monday immunoglobulin infusion in about an hour. I have this hope that the Prednisone, Benadryl and Tylenol will kick the pain away, but I have this fear that the Gamunex will make the headache worse. After all, that is the most common side effect and I suppose this could be some reaction to the IG that I’m about to double-down on by infusing again.

Anyway, a few days after my last post where I told the gods to cover their ears (which they obviously didn’t do), we were watching Downton Abbey and Anna says to Mr. Bates, “Bad harvest, bad harvest!” and explains that this is what the farmers would yell so the gods wouldn’t be jealous of their bountiful crops and take them away. A timely reminder that my superstitions have been shared by our ancestors for hundreds of years and it’s okay that I’ll be yelling bad harvest! at the sky like a crazy person, spitting over my shoulder, pulling on my earlobes and knocking on wood the next time I dare to tell you something good. Feel free to join in.

image

This is what I miss on all that days I don’t go outside for fresh air.