Tag Archives: pain

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Winter of Disjointedness

I haven’t written an update in over 7 months, which boggles my mind. It was the same amount of time between my two previous blog entries, too, so I’m not doing a very good job of keeping my friends and family up to date, but I find the speed at which our lives zoom by very unnerving.

Yesterday, my husband and I were marveling that it had been over 2 years since I stopped doing weekly immunoglobulin infusions and IV fluids. For so long, it was our routine, dictating the days he worked, the days we cleaned, what I ate, when I showered… Then we stopped and lapsed into a no-structure schedule and I’ve definitely gone downhill since then, but can I blame the lack of IVIG? I don’t know. I guess partly. 

It has been incredibly beneficial to me to track the big changes over the past 12 years – it’s helpful for my mother, too, who needs to take notes to remember the big diagnoses and events, let alone the nuances of ever-changing chronic conditions. 

And that – “ever-changing” – is my biggest hurdle. It’s hard to call my illness chronic when it seems to jump from one new acute problem to another, the blindsiding surprises causing a constant low-level wary vigilance that takes an incredibly heavy toll on us both, as we try to anticipate any crisis and create contingency plans for every situation.

Looking back on the last 7 months, two big things stand out – one good, one bad.

The good is that I finally figured out, after many months of scary bowel, blood pressure and heart issues that were truly life-altering for both of us (I couldn’t be left alone in the mornings), that I had developed reactions to Miralax (polyethylene glycol, like Macrogol), which had been my safe bowel medication for years (I’ve failed all of the prescriptions I’ve tried thus far).

It took an elimination of almost every single other thing I ingest to figure it out. I was scared to eat or drink anything, not knowing if, many hours later, all hell would break loose and cause hemodynamic instability that needed medical attention. But it was the Miralax, which I would take halfway through each night’s sleep. 

Since stopping Miralax, I have had fewer than 5 serious bowel episodes that caused pelvic floor spasms. They had been happening daily and I can’t overstate the difference in my quality of life without this constant threat and fear. 

My first endocrinologist told me: “With new symptoms, always look first at the medications you take.” Over and over, I have failed to remember this advice, like a few years ago when I was in an extreme hyperthyroid state – breathless, palpitations, not sleeping, thinking I’d developed anxiety because of the “beehive in my chest” – and it took 3 months before it dawned on me that it was from increasing my thyroid medication. Those symptoms were gone immediately after I stopped taking (temporarily) those hormones.

So, take heed, friends: never assume a medication is benign just because you’ve taken it for ages with no issues.

The bad standout thing from the last 7 months is a massive increase in EDS instability problems. I have a few areas of my body that have been “going out” repeatedly for years, but usually resolve after a few days or weeks: my neck, right clavicle, right thumb and one spot in my thoracic spine. But, back in December, I developed back-hip-SI joint instability that caused repeated injuries with normal, innocuous movements, like sitting up in bed.

I got hip x-rays and a lumbar MRI, which didn’t show the herniated disc that the doctor suspected. I started physical therapy, but a sneeze one night in February, and daring to sit on the loo the next morning caused an injury that landed me in the emergency room.

Something ripped (my physical therapist thinks a ligament or tendon attached to my sacrum) and I couldn’t get off the floor and I couldn’t empty my bladder.

The EMT that came to my house was married to a woman with EDS and he understood everything that was happening to me, which was incredibly reassuring, as the back pain in that moment made it difficult to explain that no “event” or accident had caused the injury and that my blood pressure is normally this low and that I didn’t want any medications because of reactions and please be extra careful when transferring me from clamshell to gurney to bed etc.

In the ER, I wound up having to create a huge fuss, begging for/demanding a catheter because “I am going to jam this pen into my abdomen to drain my bladder.” The pain eclipsed anything I’ve felt before. Bless the EMTs again – they could have left me in the hospital hallway, but they insisted I get a room before they left. It took 2 nurses way too long to get a foley catheter in, while holding me down with my legs splayed back, making my hip/back injury much worse, but, eventually they were able to drain 1200 ml of urine, noting that it is normal to feel the need to pee with about 150-200 ml.

The rest of the hospital visit was a debacle. They ordered another, redundant lumbar MRI, even though I repeatedly asked for a hip/SI joint MRI. They ordered a kidney CT scan, even though I asked for an ultrasound (so much radiation in my life!). They didn’t secure the bladder catheter to my leg and the balloon got pulled out accidentally, which is one of the worst pains I’ve ever felt. They told me my bloodwork looked fine, even though my potassium was too low. They couldn’t get my IV line to stop filling with blood (the doctor actually came in, said, “that’s weird,” clamped it off and left (?!), so I unclamped it and got medical tape out of my bag to secure it myself in a way that allowed the saline to flow). And they gave me fentanyl, which didn’t touch the back pain, but caused one of the worst migraines of my life that went on for days and I thought I might have to go back to the ER to break that pain!

But, worst of all, I couldn’t be in a seated position in the week afterwards and bearing down slightly (which I have to do even to pass gas and urine) flared the pain in my flank, so I couldn’t do my daily enemas, which meant I couldn’t eat. It became very obvious that something like this – a different structural issue – would probably be the thing that pushes me into bowel surgery. 

[An aside: I understand that this downhill progression in mobility and upward trajectory in pain is probably due to my tethered spinal cord, for which I have so far refused surgery, but, no, I’m still not convinced that that operation would make things better. I will write about this some other time.]

During this time, I had an urgent appointment with Dr. McDreamy, my colorectal surgeon (who really is dreamy) to figure out next steps in case the injury remained bad enough that I couldn’t eat/poop normally (ha – as in, my “normal”) for an extended period of time. He said that he would be available whenever I was ready and we could do a colostomy bag. Music to my ears. The most reassuring discussion I’ve ever had with a doctor. He said I could try botox in my anal sphincter and a sacral nerve stimulator first, if I wanted (though, they won’t fix my prolapse issues, so they are not long-term answers). 

I haven’t made those appointments yet. As usual, I don’t want to rock this shitty, broken, leaky boat in case it makes things even worse. I’ve been concentrating on the most pressing concern, which is trying to heal this injury, but it’s discouragingly stubborn and I have no medications to help, aside from CBD balm and lidocaine patches. It’s a moving target, from left hip to SI joint to lumbar spine to thoracic paraspinal muscles and back again.

I have to be aware of every change in position: I am wearing an SI belt and lumbar brace all day, but sitting, turning, reaching, and bending can all cause re-injury. I have 4 physical therapists(!) and I’m doing daily exercises, but they are tiny, basic isometric movements that always cause worsening pain, so it’s slow-going.

I’m disabled to the point that I haven’t gone for a scooter dog walk in 8 weeks and I’ve also had massively increased exhaustion and weakness in the last month, so everything feels impossible. Getting out of the house with Penny is the only thing that keeps me sane and this has really taken a toll. But, even if my normal energy returns, my big mobility scooter with good suspension is just too jostley on a body held together with jello and rebar. 

In a post 15 months ago, I said my plan of action consisted of:

  • Getting calories in and out (I’m doing an adequate job of calories, but not nutrition. I’m eating about a third of my protein needs and not nearly enough vegetables for my vitamin requirements)
  • Keep trying bowel medications (I’m currently managing with only Mag O7)
  • Pelvic floor physical therapy (I’m now in regular and counterstrain PT)
  • Get a “small bowel follow through” study (didn’t do)
  • Get a mesenteric CT angiogram (didn’t do)
  • Talk to my surgeon about a stoma (done!)
  • Trial a fentanyl patch (done!)

My updated plan is:

  • Better nutrition
  • Get immunoglobulin infusions back
  • Trial painkillers, muscle relaxants, bowel meds and more
  • Religiously do PT exercises
  • Get a small bowel follow through
  • Try anal sphincter botox
  • Come to terms with the fact that I can’t put off bowel and spinal surgery forever. And we’re not getting any younger.
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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! 🥳🥳🥳

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Uncharted Waters

I’ve reached a new physical low and I don’t have any idea of the best direction to go from here. When it comes to my health, I don’t do well emotionally without a plan of action. I can only rest easy when I have prepared for all eventualities to the best of my ability, whether it is going for a drive in the car or thinking about major surgery. As an example, I made a will when I was 37 and, in 2011, I asked my boyfriend of 13 years to marry me so he could legally speak for me if I couldn’t speak for myself. That’s a romantic proposal.

But I’m currently blinded by pain, fear and exhaustion from constant interrupted sleep. I’ve been working so hard this past year to get the appropriate testing of my GI tract, do the hail mary treatments and line up willing surgeons for the operation that is undoubtedly needed, but… a decade into this shite, I am finally at that stage where doctors look at my records and show me the door.

One doctor said right off the bat: “Do you know what scares surgeons the most? EDS [Ehlers-Danlos Syndrome]. Do you know what scares us the second most? MCAS [Mast Cell Activation Syndrome].” She sent me on my way, unwilling to even discuss what was happening anatomically.

I had another surgeon walk into the exam room and, without any greeting whatsoever and without even looking at me, she said, “Well, you certainly are obsessed with your bowels, aren’t you?” Immediately after that, she asked for the name of my therapist. There was more and worse derogatory interactions with her, but I’d like to not get riled up tonight. My great therapist said, “You encountered one of life’s assholes, this one just happened to be a doctor.”

I’ve decided any surgeon who is a) compassionate and b) willing to help people with connective tissue disorders and idiopathic anaphylactic reactions is a bloody hero. I had no idea I would become a medical pariah. 

There was a time when I was trying to fix my immune deficiency, my hypotension, my hypothyroidism, my chronic migraines, flu-like symptoms, reactivity etc… It’s all still there and I’d give anything to “just” be dealing with those. I’d have some semblance of life; I’d not be in crisis every day. Sick, yes, but not crisis. I was once chronically, predictably, stably ill and it feels a bit perverse to long for that life again.

Five years ago, I started to have intermittent pelvic floor spasms. Some were very obviously bowel spasms and some were the muscles/ligaments of the entire pelvic floor. The latter were more severe and often triggered a vasovagal collapse where my blood pressure and heart rate would plummet and my husband would call the paramedics. I stopped a lot of things to try to control these. I stopped having periods, I stopped taking stimulant laxatives, I stopped holding my pee, I stopped eating “FODMAP” foods that can generate gas, I stopped having sex.

A year ago, the spasms started to escalate. I had one single episode in January, 2022 and, this week, I have had at least one a day, six days in a row. They are SEVERE. I never use that word lightly. They are agony and I never know how long they will last and whether they will trigger a cascade into hemodynamic instability or loss of consciousness. 

screenshot of my calendar this week

The spasms usually start in the mornings when I stand up (or sometimes just sit up in bed) and my intestines drop towards the ground, along with my bladder and uterus (which have also fallen from their normal positions). The weight and pressure this causes on my pelvic floor kicks off a spasm and it is greatly exacerbated by stool or gas in my colon, so eating anything has become scary. Terrifying, actually. Even drinking causes problems — I recently realised that my electrolyte water (TriOral rehydration solution), which I’ve been drinking day and night for two years, was causing a lot of gas production.

Gas causes more issues than anything because it gets trapped in the folds and herniations and the pressure increases to unbearable levels. The pain is blinding. And by “gas,” I really mean air because there is absolutely no smell at all. It is as if someone inserted a hose into my transverse colon and pumped it up. I’ve been eating a very limited diet for years – there really is nothing more I can cut out to try to manage gas production. It’s there even if I fast and it’s made worse by the medications I have to take for constipation like Miralax, Linzess and magnesium oxide. It’s there because I probably have SIBO, too (small intestinal bacterial overgrowth — I’ve treated it many times, but I’m not sure if it’s worked).

My small bowel is “lying on the bottom of your pelvic floor, like a hose curled in the bottom of a bucket,” one surgeon told me. “Nothing is connected to the sacrum anymore — you have complete internal rectal prolapse with intussusception of the rectosigmoid.” He drew a picture of this “intussusception” – the intestine looks like a sleeve telescoping into itself when you pull your arm out. 

My umbrella diagnosis is visceroptosis – abdominal organs falling and prolapsing out of their normal positions – but there are different names depending on which organ has the issue. The ones I have are:

Enterocele: where the small intestine falls between the vaginal wall and rectum (which should be fused, but, in my case, are separated).

Sigmoidocele: essentially the same as an enterocele, only the sigmoid colon has dropped.

Rectocele: the rectum herniates forward and into the vaginal wall.

Cystocele: bladder falls. 

Uterine prolapse: uterus falls.

Perineal descent: perineum bulges downward. 

Intussusception: telescoping intestine. 

The two most profound issues I have on the MRIs are the enterocele and rectocele, above. So, as you can imagine, with both of those bagged-out intestines holding onto poop and gas, prolapsed into the same low-down space, as well as my uterus and bladder sagging, it is an unbelievable amount of pressure on my pelvic floor. The only thing that has helped marginally is lying on an adjustable bed with my head as low as possible and my legs elevated, which allows gravity to shift my intestines back towards my chest. I do this over and over throughout the day to reverse the downward pull – after standing in the kitchen, after sitting at the table or on the toilet. But it doesn’t last long and just moves the pressure under my diaphragm.

Recently, though, things have escalated. Cramps wake me up all night long and, during the day, I can hardly be upright without my pelvic floor going into a spasm. I quickly get on the floor, put cushions under my bum and moan, pant, cry, try to focus all of my attention on relaxing those muscles and easing the weight on the ligaments, while begging the universe to make it stop and vowing to never let anything pass my lips again. I’m hungry all the time.

I can’t keep doing this every day. I don’t want surgery, but I can’t avoid it. I don’t want mesh implanted in my abdomen (my immunologist says absolutely no mesh in someone with a mast cell disease), but I’m told the only other option is a colostomy bag. I’m told whatever I do will probably fail (even the bag) because I will still have slow-transit constipation and shitty connective tissue. I’m told that the spasms might not stop. That thought is very overwhelming. The spasms are more life-altering that anything else. What would the future look like trying to avoid them? Pooping into a bag, but nil by mouth? IV hydration and parenteral nutrition? I need doctors to think outside the box about how to stop the symptom escalation. Botox? Prolotherapy? Nerve stimulators? Nerve blocks? Am I going to have to live mostly on my back to stop my organs from falling?

There are Facebook support groups for everything you can think of, but not for visceroptosis caused by EDS. I’ve met two people in a similar boat. (One of them shared photos of herself in the morning and at night showing how her displaced intestines caused her abdomen to balloon out over the course of the day. I did the same thing yesterday and it is striking, but, although I share everything about myself here, I’m not sure I want to post photos of myself in my knickers. Sorry to disappoint.)

There are no doctors who really understand this particular problem and there is an incredible paucity of studies. A prolapse specialist said to me: “I wouldn’t refer you to any of the colorectal surgeons I know. They really only do routine tumor excisions or coloectomies for things like bowel cancer.”

Oh. I see. What an education I’m getting! Silly me thought that any colorectal surgeon could fix this. My problems are “higher up,” not a “simple” rectocele repair. My issues are from connective tissue laxity, not from pregnancy trauma. Not only do most colorectal surgeons not have the expertise and experience, most wouldn’t take me on, anyway, because they and their hospitals like success – they don’t want to take chances on patients with high rates of complications and surgical failures. These are uncharted waters.

My only plan of action right now is:

  • continue doing everything I can to get calories in and out.
  • keep trying and retrying bowel medications.
  • continue pelvic floor physical therapy (which feels useless – breathing exercises, bowel massages, visualisation).
  • get a “small bowel follow through” study (which is proving to be complicated – shocker! – because they don’t usually do upright x-rays and they don’t have any barium drinks that look okay for me to ingest).
  • get a mesenteric CT angiogram (which I’ve been putting off for a few years because I had a small reaction to the IV contrast last time and I’m nervous it’ll be a bigger reaction this time).
  • talk to my surgeon about a stoma (for a colostomy bag) since he won’t entertain the notion of a repair surgery without mesh.
  • trial a fentanyl patch in-office with my immunologist and then other medications to develop a post-op painkiller plan (how on earth do I get the nerve to do this??).
  • do I continue looking for other surgeons who have experience with these more complicated, “higher up” repairs and who won’t use mesh?? It’s exhausting and I really don’t think that doctor exists.

But none of that feels possible when I’m so depleted. My husband had a total knee replacement surgery a few weeks ago and the extra walking, driving and chores I was doing made it very evident that my tethered spinal cord is a major player, even though I don’t want to face it. When I’m pushed outside of my energy envelope and normal step count, I have great difficulty walking. I’m hoping now that he has turned a corner with his recovery, I’ll be able to gain some ground and see a clearer path forward.

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Many symptoms. Many tests.

I’m going to start with the last things first:

In the next month, I am having a colonoscopy under anesthesia, a fluoroscopic barium defecography, an anorectal manometry, an ACTH (Cortrosyn) stimulation test, a transvaginal ultrasound, a thoracic MRI, skin prick allergy testing, a teeth cleaning and exam, an eye exam, and two blood draws. As well as trying to do IVIG every week and regular online doctors’ appointments.

What I really want to do is cancel everything, drive to the desert and live in peace.

The one thing I know for sure is that the more I rock this body’s boat, the worse things get, so I usually freeze and do nothing. But, lately, there seems to be a new mini-crisis most days, even though I took a long break from everything during the Omicron spike. It was lovely and peaceful for a while, but my body has been scaring me this month.

One day last week, my legs started to shake and then just buckled with no warning and I couldn’t walk. I had been moving a side table, so I guess I injured something, but I didn’t feel an injury, I just suddenly couldn’t walk and it is always in the back of my mind that I have a tethered spinal cord and leg/gait issues may get worse (many symptoms — like nerve pain — that could be attributed to tethered cord have gotten better, so I’m not convinced that “detethering” surgery is the answer for me).

Over the following days, unusual deep pain traveled from my buttocks to the back of my thighs to my left calf and then disappeared. During that time, I became desperate for a house with no stairs. I bought a bedside commode. I gave up a foster dog with whom I’d already fallen in love. Losing the limited mobility I have is terrifying. My husband would have to manage so much more and my quality of life would quickly plummet considering the energy it takes to keep my intestines working and food moving through. Not to mention losing dog joy, which is almost all joy in my world.

This week has been awful whack-a-crisis every day. Over the weekend, I was hit with terrible vertigo. This is one of the most sickening feelings — like your eyes are tumbling around in their orbits and you have to keep very, very still to stop from groaning outloud. It got mostly better the next day, but I still feel like I’m walking on a ship.

Monday, I had a pelvic spasm or bowel cramp so painful, I thought it was going to trigger a vasovagal collapse because I started to tremble and got weak and breathless.

Tuesday, I spent the day on the dog bed in front of the fireplace in a 76 degree room, shaking, chilled to the bone, with blood pressure all over the place, trying not to black out. I thought I’d left these episodes behind.

Yesterday, I developed an extremely bad right-sided migraine, which woke me out of sleep, panting from the pain and dreaming of IV narcotics — which I’m allergic to, but the pain was bad enough that I thought it wouldn’t matter if I stopped breathing, I’d let them inject anything to take the pain away.

So — it’s like that. In 14 days, I’ve gone on 3 scooter walks with Penny and I’m going out of my mind, desperate to get my slow, predictable days back.

In the midst of all this, I tried to continue weekly IVIG, which is undoubtedly the cause of some of this. I don’t know why it has turned on me and I don’t have words to describe the despair if I lose the one treatment that has helped me so profoundly.

I also saw another pelvic floor surgeon who was so rough while fitting me with a pessary, that I cried out involuntarily in her office. Her exam wasn’t even that bad in the grand scheme of things, but I was mute on the drive home, feeling traumatized by the brusque anal/vaginal invasiveness of it all. I only managed to keep that torture device inside me for 3 days because it made urinating very difficult. $100 down the drain and the only reason I was able to remove it was because I joined a FB pessary support group to get tips. Thank dog for other patients!

My biggest fear at the moment is the looming colonoscopy. I’ve been rescheduling it for 7 years. Before covid, I was cancelling out of fear — feeling the information gleaned from this test was outweighed by the risks. Just in the last 2 years, I’ve cancelled 8 times. They were legitimate reasons — covid spikes and my body being too unstable — but my GI doctor is frustrated and I still don’t feel confident that this is the right decision, even though it’s now 4 days away. My blood pressure is chronically low. I can’t get it to budge above around 85/55 — often lower. I wanted to try Fludrocortisone (a corticosteroid that can boost blood volume by increasing sodium in the body) before doing this procedure, but it takes me an excruciatingly long time to first get the nerve to try new medications, then to find a good day when I feel stable enough and then it takes weeks of eating little slivers to work up to a meaningful dose. It didn’t happen, along with dozens of other meds in my cupboard, waiting to be opened.

I was going to give myself IV fluids at home during the colonoscopy clean-out (I do my own peripheral IVs), but, in the last year, I’ve been having scary episodes and just this week realised they might be from IV saline. My vision starts to darken, like I’m going to black out, I get very cold and shake badly, my blood pressure spikes — this can go on for hours. It’s always the day after IVIG, so I stopped my infusions for 3 months, but then it happened when I did IV fluids without IVIG. I thought it must be the saline coupled with Midodrine, the low blood pressure medication I was on, so I stopped taking Midodrine and for 6 weeks, I was sure that was the answer. Until this week when it happened again.

My blood pressure has been dropping very low during IVIG, so, on top of the liter of IV saline, I’ve been drinking around 3 liters of salt/electrolyte water on infusion days (and eating a ton of salty snacks). It didn’t help boost my BP during the infusion, but I had another one of those episodes the day after. It almost feels like volume overload because my eyes get swollen, my BP spikes and I feel breathless, but my “high” blood pressure is still low by other people’s standards. During this episode the other day it was spiking to 107/74. How do you explain to a doctor that you’re in a “hypertensive” crisis when your BP is still lower than normal?

So, I’m about to start a dehydrating colon cleanout when I’m already weak from chronic hypotension, hemodynamically unstable, battling presyncope, having pelvic floor spasms and bowel pain, prone to hypoglycemia, my heart is tripping all over the place, and my brain feels like it’s going to explode out of my right eye. If I get through the prep without having to call the paramedics, I’m then meant to volunteer to let a stranger inject powerful sedatives and painkillers into my vein and hope that I don’t go into anaphylaxis or have my vitals bottom out. Or catch covid, for that matter, since vaccination is too risky, yet I have a primary immune deficiency, which feels like the worst combination during a pandemic.

Being released from the hospital and coming home almost feels the most reckless because all hell breaks loose in my body AFTER the fact. It’s in the middle of the night or the day after that the adrenaline wears off and the real problems start. I wish they’d admit me afterwards for observation, honestly, but it would be ludicrous to even ask. These are routine procedures that everyone gets done, after all.

But it doesn’t feel worth it. It feels dangerous. Which is part of why I’m writing this, I guess. I got out my advanced directive and durable POA. FFS.

We also found out this week that my healthy rock of a husband has a brain aneurysm and will need surgery. Surprise! That’s a story for a different time. But, really, forget all of my stuff. If anyone out there is going to send good thoughts/juju/prayers this way, please send them directly at my husband’s brain.

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what is and what should never be

Yesterday, I was in a very dark place. I was (and am) beaten down by relentless bowel symptoms that eclipse all others and continue to monopolize every day.

What food to buy, how to prepare it, when to eat and * whether to eat it, how much to eat and how much to blend it, what digestive aids to use — bitters, ginger, HCl, enzymes, castor oil, Digest Zen, massage — how to move it through, what medications to take and in what combinations, at what times, how to ameliorate the side effects, how to improve my bathroom situation — padded toilet seat, squatty potty, head rest, neck brace, lubricant, pillow — worried that I’ll be an 80-year old trying to get up and down off the floor to give myself enemas, worried that my husband will be giving me enemas, scouring support groups, researching surgeries, praying for someone to cut out my colon and replace it with a bag… Fearing that this will kill me. Or that it won’t and I’m trapped in this body with no easy exit.

Today, I saw this memory and it immediately brought tears to my eyes. At this point, I’d been sick for almost 3 years and mostly bedbound for almost 2. I was so, so sick. I shudder to think of it. Sure, I could still eat solid food and poop, but only if I managed to get up and leave my room. They were the most terrifying years of my life. A privileged “terrifying,” I realised even then — I had family, a home, resources — but gratitude didn’t quash the symptoms, fear and confusion about what was happening to me.

It took Herculean efforts on the part of my mother, husband and friends to get me to California to see Dr. Chia (where I took this photo) and it felt like the effort might kill me. But the emotion from seeing the ocean when I truly thought I never would again (shit, even the feeling of seeing Seattle as we drove to the airport) was completely overwhelming and magical. And, also, very sad because I didn’t know how or if it could happen again.

Anyway, I needed this slap in the face today to remind me of what was and what is no longer my situation. My illness now is structural and neurological. It’s just as scary and uncertain, but I can take my dog for a walk with my mobility scooter and cook some soup and talk on the phone and watch a movie. Without a pandemic and if my gut behaved, I could even have a social outing.

From 2012 through 2015, I white-knuckled-it through every single minute of every single day, concentrating on taking the next breath and making it to the next hour. I still find it exhausting trying to keep my body functioning, but it did get better, just like my Mom told me it could. I’d once had a rare better day with less poisoned pain, fewer flu symptoms, an uptick in energy and she said, “If it happened once, it can happen again. And for longer.” I clung to those words like a drowning person, trying to swim up towards the light.

For everyone in this situation, for people with severe ME, for all the long covid patients, it does get better. Or, at least, things will shift and change. Grab hold. Hang on.

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