SIBO Antibiotic Failure in Half a Milliliter.

Referring to my last post:

I am devastated. But allow me to give you some backstory, so you understand my emotional reaction to a failed drug trial. It took me a year to try the SIBO protocol, but, during that year, I wasn’t just sitting around, waiting to get the nerve up — there was so much time, energy and money invested in procuring the safest and smartest medications for me.

Initially, Dr. K wanted me to take the two gut antibiotics without having the SIBO test, but I asked if I could do the test first ($180) because I had been negative for SIBO a few years ago. The preparatory diet was brutal for me this time (when I did it in 2014, I don’t remember it being a big deal). I had to eat only meat, eggs and rice for two full days because of my chronic constipation and it made me very sick and weak, nauseous, hungry and shaky. During the test, I had a massive blood sugar crash, but you’re not meant to eat or drink while collecting breath samples, so I waited too long and got more and more hypoglycemic, finally giving in to apple juice, but the whole experience took a toll. So, there was that.

Then there was the energy involved getting the Rifaximin: Asking my doctor to send in a pre-authorization, getting refused, sending in an appeal, getting refused, a third party appeal and refusal — all of this taking so much time in between each step. Calling around to pharmacies to see if there was anywhere that sold it for less than $1,500. Not wanting to buy the generic for $200 because it has colourings that I avoid. Asking my doctor to send a sample of the tablets, so I could try them before buying them. Waiting on that sample to arrive. Waiting for a good day to try it — a day I felt strong enough with no other conflicting variables like a migraine or a day I was doing my infusion. Calling a pharmacist to see if I could cut the tablet (they said no because it’s enteric coated to stay in tact until it reaches your gut), but cutting it anyway because I have to start with a sliver and the worst that can happen is it’s not effective and who cares? — this is just a test. Taking bigger and bigger slivers over the course of a week. Deciding it’s okay and safe to order from the online pharmacy in Singapore and, because so much time has gone by and it takes another 2-4 weeks for delivery from the time of order, having it sent to our California address.

In the meantime, once I knew I wouldn’t react to the Rifaximin, I started calling around about the Vancomycin (because I’m meant to take them concurrently). I called so many compounding pharmacies, so much time invested, taking notes on brands, ingredients, prices, my options for liquids or capsules. Then, when I had found the cheapest ($200) and most competent-sounding pharmacy, I consulted with the pharmacist over and over about the details: first, about ingredients (no flavourings, no preservatives, compounded only in sterile water). Then about the timeline, explaining that I couldn’t start at full dose, that it would take me a few weeks to titrate up and is there a way to prolong the 2-week shelf life? He said he could freeze it, extending the “discard by” date from 14 to 90 days. Then we brainstormed some more and decided to freeze it in 4 bottles, so I only needed to defrost one at a time, keeping the others preserved. Then he said he should make it at the last minute, to keep it fresh as long as possible. My husband drove across town on the day we were leaving for California to pick it up. I kept it in a cooler with ice packs during our road trip and managed it like a bird on a nest: tending to it, moving it out of the sun, re-freezing the ice packs each night. And then, once we were here, I just waited for the Rifaximin delivery so I could start them both together.

So much goes into this sort of thing, aside from the $580. Not to mention my hopes. For all my fear of repercussions, once I decide to do something, I put nothing but a positive and excited spin on things. Taking antibiotics for the first time could be a game changer — like antivirals have been for so many. I’ve never addressed my gut and I certainly don’t have a strict diet, so there’s hope for positive change there. What if my brain symptoms are better and my sleep is better and I don’t have to do enemas anymore? I am an expert at swallowing something and forgetting about it, so I’m not nervous or over-analyzing my body. Down the hatch and that’s it. Don’t pay attention. But last night the Vanco got my attention.

My prescribed dosage is 30 ml a day. THIRTY. Last night, I took 0.5 ml. HALF A MILLILITER. Soon after, something started happening in my throat on the left-hand side. Then my tongue started swelling on the left. Then a headache on the left. And, finally, heart palpitations. My tongue got bigger and bigger. I was dumbfounded. If I were going to react to anything, I thought it would be the Sunset Yellow generic Singaporean Rifaximin, not the sterile water vanco that Kyle the pharmacist put so much care into!

Dumbfounded and devastated. For me, tongue swelling is as scary as it gets because it is the precursor to full-blown anaphylaxis — especially tongue swelling with head and heart involvement. The mast cell meltdowns that I experience in the night, with sweats and chills and poisoned feelings, are much worse physically, but not as serious as tongue swelling. Not as scary. All of my anaphylaxis ER visits involved tongue swelling. It’s something that can get worse quickly. So, how do I get the nerve up to try the Vanco again? Are all those frozen bottles of medication a loss? That’s what made me start crying. Not the time or money or hopes dashed, but the thought that I can’t try it again. It’s not like my hydrocortisone success story; I can’t push through. Next time, it could be much worse, like your second bee sting. My control is taken away. Even if I wanted to try again tomorrow… I can’t risk anything even akin to anaphylaxis. It’s the trauma I will always carry. If I spontaneously recovered from ME today, I would still carry the fear of anaphylaxis with me for the rest of my life, like a brown recluse spider, hiding in plain sight, threatening sickness and death when you least expect it. Damn.

———————————————

Update: A Google search shows me that people take Rifaximin without the second antibiotic. I inferred from my doctor that they had to be taken together, but maybe not. Maybe all is not lost for treatment.

———————————————

Another update: One long bath, one meditation and a good conversation with my husband later… Feel much better about the whole thing. He’s so good at saying, “don’t think about the money, let it go” and “it’s just a drop in the bucket of the last 6 years” and “move on to the next thing” and “you’re doing okay, you’re not bedbound, you’ve made improvements without this treatment.” And then I look at the vast desert sky and envision the stars and universe beyond and think about how small I am. And how lucky I am. My tongue swelling resolved with Benadryl last night and today I’m eating ice cream next to my dogs in the sun, listening to a cacophony of birds nearby and coyotes howling in the distance. 

Medication Wars: Treating SIBO and Low Cortisol

13 months after my California doctor wrote the prescriptions for two gut antibiotics to treat SIBO, today is the day I have to face the music. I’ve put it off for this long out of fear: Fear of a mast cell reaction (Rifaximin ingredients: Sunset Yellow FCF, ffs); fear of no reaction, but feeling terrible from die-off (we just arrived in the Cali desert for a month, so it’s really fear of destroying my idyllic get-away); fear of altering my microbiome for the worse, rather than the better (causing more of a candida flare, causing C. diff etc); fear of spending the money, but not not being able to take the medicine (each one was $200!). Also, although the SIBO test was “off the charts” (in my doctor’s words), I don’t have the symptoms, so fear of messing with the gut I know and creating new issues. I haven’t taken an antibiotic in almost a decade–well before I got sick–so, there’s fear there, too.

IMG_20180501_100901_710.jpg

But I see my doctor later this month and I’m determined to do the treatment before I see him. I now have both medications in front of me, money is spent, no excuses. One of them is compounded in sterile water and needs to be thrown out in a few weeks, so I’m starting now, with one drop, as soon as I stop typing… which, of course, makes me want to keep typing, keep putting it off, what else can I tell you…?
_
_
_
Okay, I’ll quickly tell you a good drug story, which will bolster my confidence. The first medication I was ever prescribed after getting sick was hydrocortisone. The pharmacist said, “If it gives you a headache, let me know.” It gave me a whopping headache and, back then, I didn’t understand my reactions and how I have to start at micro-doses–I didn’t even know you could cut a tablet or open a capsule–so, I just stopped taking it after two days. The ND said she presented my case to her colleagues and everyone said, “Yes, hydrocortisone!” but it was my first experience with an ND and perhaps I didn’t fully trust her, but, more so, I didn’t want any worsening symptoms, so I just stopped going to her. That has been my MO thus far: try not to rock the boat, except very gently, over a very long period of time (and, by the way, for the most part, I have improved over the years (knock on wood, toba, toba), which has reinforced my careful tendencies).

Last year, my California MD Rxed hydrocortisone again. I tried an 1/8 of a tablet in August and felt short of breath, so didn’t take it again until 3 months later. Then I was spurred on by a receptionist at a doctor’s office who started crying (!) on the phone to me while talking about her daughter who needs hydrocortisone all day long, so I tried it again. It went okay for a few months. Then one day it made me feel gittery, spacey and short of breath again. Then, a few weeks after that, it hit me like a freight train. I wrote in my calender: “Shaky, drugged, agitated, buzzy muscles, feel like I’m on speed, then possible blood sugar crash (or maybe just still shakes from hydrocortisone). Then, after hours, a dull obvious-reaction headache and stuffed ears.”

This is what used to happen to me with antihistamines: I’d handle them for days and then, without warning, the same dose would send me into a scary cascade of anticholinergic symptoms (I still mourn the loss of Unisom, which helped a lot with sleep for a while).

But, I persevered with the hydrocortisone (yay, me!) and, last month, something clicked, I could feel it help my body. I can feel the uptick in energy and the decrease in brain symptoms. I give hydrocortisone full credit for getting me through the weeks of packing for this trip and those back-to-back high-step count days. Each morning, I marveled: I’m not bedbound, I think I can do it again. I have no side effects now and I might even try more than a 1/4 tablet. 😉

Meat Madness

9 weeks ago, (one of) my doctor(s) asked me to stop eating meat and a few other things because of a blood test that supposedly showed I was intolerant. I know many of you are vegetarians, but not I. Not ever. Meat is a staple, something easy to heat up and my main source of protein. Also, so much food waste. Jars and jars of bone broth and meaty meals in my freezer. I cried on the phone with her, but agreed to try because why not? I have been doing so poorly lately that my husband has gone off to the Sunday farmer’s market to get me a chicken in case this elimination is contributing to my symptoms.
The problem is… when a doctor tells you you are intolerant to something, it worms its way into your brain and sets up camp in the deep recesses, causing a bit of almost-imperceptible anxiety when you eat the thing in question. It happened to me when IgE blood tests showed I was allergic to eggs and tomatoes. They didn’t show up again on subsequent tests and I eat eggs all the time now, but there’s always a tiny voice hissing, “Is this egg contributing to your issues? Don’t eat too many!”
It’s the same thing with that dangerous and evil AIP diet. It was bad for me and I’ve been eating grains, dairy, legumes etc. again for years, but … but… all the stuff you’ve read just sits in the shadows of your mind, whispering: “Is this making you worse??” And that’s even when the grains are gluten-free, the dairy is organic and the legumes are soaked. Fuck sake.
So, anyway, we’re roasting a fresh chicken for lunch and we’ll see how it goes. Fingers crossed it doesn’t make me worse. Or, if it does, that I recognise and can identify it, because god knows I’m an expert at ignoring any reactions so I can continue eating my favourite foods.

Inserting my own peripheral IV catheter.

Warning: Graphic medical procedure!

I have been trained to insert my own peripheral intravenous catheters. I am a patient, I am not a health professional. This is not a tutorial or medical advice. This is simply a video of my personal infusion practice and should not be copied or mimicked by anyone else. NOBODY SHOULD EVER TRY THIS THEMSELVES WITHOUT MEDICAL GUIDANCE AND TRAINING AND A DOCTOR OVERSEEING THEIR CARE.

*See full disclaimer below.*

——————–

When I was learning to insert an IV, I couldn’t find many decent videos online (I was only allowed one nurse visit to walk me through it and I found watching people do it was even more informative). It’s not the best angle, but I’ll have to wait until my mother is visiting again to get a better video.

*HEALTH DISCLAIMER*

This blog is my own personal journey. The information and other content provided in this blog, or in any linked materials should not be construed as medical advice, nor are they intended to replace a one-on-one relationship with a qualified health care professional. NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.

Driving, yelling, shopping, crying, writing and ice cream.

If I don’t have brain symptoms (which is the true limiting factor to my writing this year) and I start to post something about my illness, about my days, about my lack of coping skills, I invariably think, “You aren’t bedridden, how can you complain? You are able to feed and bathe yourself, are you really going to bitch about how difficult your life is?” Because that’s what I want to do more often than not. Complain. Vent. Rage against the world. And perhaps make some tiny bit of sense out of this existence and give myself some breathing room.

I’ve been so bottled up, I have tears threatening to spill over every day. So, I am going to write about today and preface it with this: To my friends that can’t get out of bed or watch TV or eat whatever they want… to those of you that haven’t left the house in years and don’t have some of the things that keep me sane like my dogs and my husband (I probably should have led with the husband there), I think about you. I shudder to think about you. You inspire and humble me with your resilience and I wish I could change things.

I want to write about the small, but significant choices I made today. It’s a short story and the end of it is I went to bed and sobbed into my pillow because my therapist said I should. He said crying is a primal emotion that serves a purpose and I should let it out, so I did. I don’t know if it helped. I feel the same as I did before, only with swollen eyes, but I appreciate that he gave me permission, for lack of a better word. He’s always telling me, “Get out of your head, stop trying to rationalise everything, stop trying to make an action plan for everything, stop the black and white thinking.” But if I’m not analyzing, organising, planning, executing, succeeding and then second-guessing everything I did, then who am I? That’s a rhetorical question.

Anyway, today.

I can’t remember the last time I went in a grocery store. Many, many months ago with my husband, I think. Maybe even last year. It’s a big deal, it takes planning and guts. We had a 10% off promo that needed to be used today and the store was a 4-minute drive. They have a deli and I decided that driving there and buying deli food would be less energy than trying to cook something. After all these years, I still marvel that these are the sorts of choices we (those of us with energy deficits) have to make. Driving, if my brain is operational, does not use up a lot of my energy, but washing, chopping, standing at the stove, stirring, whatevering… It’s exhausting. So: drive, park, the deli is right inside the door, get food, come home. Scary when I’m having a difficult health month, but easier, I decided, than the alternative and, if I’m not pushing myself too hard and crashing, then who am I? Again, rhetorical.

I’ve been beaten down recently by a 5-day migraine and bad sleep for months, wondering how to keep going through the motions of survival. In a nutshell, I’m pretty raw and small things feel harrowing. I talked to myself the whole way to the store: “You’re fine, you’ve got this, you won’t pay for this. Red light means stop.” I parked in a handicapped parking spot (with my permanent handicapped parking permit displayed) and shuffled to the elevator that goes up to the store. There’s a small stairwell, too, but I’ve never climbed it in the 4 or 5 times I’ve been at that building. I hear someone yelling across the parking lot. YELLING. Not nice yells. A woman near me says to me, “She’s saying she doesn’t think you’re disabled.” I replied quietly, “Oh, I am” and she gave me a kind look as she started up the stairs and nodded at the elevator as if to say, I can see that. But, also, look at my face! Can’t you see it? How can they not? But they can’t. Maybe in Seattle in November everyone is grey-skinned, sunken-eyed and haunted-looking to a certain extent.

I thought that was the end of it, but the woman in her car was still hollering. She’d stopped on her way out, blocking people, so intent on getting an answer that she’d rolled down her passenger side window and was shouting, “DISABLED? DISABLED? ARE YOU? HELLO? ARE YOU DISABLED?” It was aggressive and accusatory, not inquisitive or, god forbid, compassionate. I had already nodded yes at her, but she continued on. I mouthed, “I am,” but she couldn’t see or it wasn’t good enough. I started to feel very weak because I can’t sacrifice the energy to go talk to her, I can’t sacrifice the energy to project my voice, people were staring now and I felt defensive and emotional and the heat was burning up my chest and, before I knew it, I roared YEEESS! and immediately felt dizzy, immediately had a sore throat. Legitimately — a sore throat that’s still here tonight. We people with ME don’t roar. And, oh, how I miss it. How I miss being enraged and having a good old screaming match, replete with stomping off and door slamming. I used to be really good at that.

The woman shouted back: GOOD! and drove away. It echoed around the closed underground lot and made me feel very small.

I tried to tell myself her heart was in the right place, that she was looking out for disabled people and that I’m glad there are ballsy watchdogs like her in this world… but it didn’t stop the resentment from welling up. She caused this embarrassment, this upset, she caused me to yell when my voice is so weak. And she’ll be fine, she won’t pay for this interaction because she wouldn’t have initiated it if that was a concern. I started silently blubbering in the elevator. I walked to the deli weeping, I ordered the food while sniveling, I wiped away tears while paying. And I bought a pint of chocolate hazelnut fudge ice cream because fuck that lady.

When I went to leave the parking garage, I realised I hadn’t gotten my parking ticket stamped, but there was no way I could walk back to the elevator and into the store. Another example of the small, but soul-eroding kind of choices we have to make. I was so beyond my safe energy expenditure that I worried about not making it home. It was too far to go back and I had to save my steps to get in my house. So, I paid for parking and it negated the 10% off promo that inspired me to venture out in the first place.

When I was putting the things into the fridge, I did it sitting on the floor and when I stood up, I bashed my head so hard on the corner of the counter, that it drove me back to the floor, my vision whited out and stars burst and birds chirped around me. The migraine, which I’d just quelled yesterday with my infusion medications, burst back onto the scene, shooting cyclical stabbing pain through my left eye. That was it. I took my therapist’s advice and went to bed to sob into my pillow.

I do feel a bit better now, so maybe it did help. Or maybe it’s because I’m writing for the first time in over 5 months. Or maybe it’s the chocolate hazelnut ice cream.

Treatment Update

Today (actually last Thursday, it took me a while to write this), I had my follow-up appointment with Dr. Kim to go over the gaggle of blood tests I had done in March. There is a lot that I am adding into my regimen, so I wanted to document it all asap before I forget everything she said.

We’re going to try hyperbaric oxygen therapy! I said it as a joke as we walked past the room with the claustrophobia chamber: “When do I get to dive?” And she thought it was actually a good idea. So, I’m going to start with a very short time (10-15 minutes) and work up to 60 minutes “at depth”, with supplemental oxygen, once a week. This is out-of-pocket, of course, and pricey at $150-$175 per 60-minute session, so I’ll try a few and see how I do.

I am starting a slow treatment for candida with Nystatin, Diflucan and Thorne SF722. Here’s the protocol:
*Nystatin on Mondays and 2 capsules a day of Thorne SF722 Tuesday through Sunday for 3 weeks.
*Then the same thing with Diflucan on Mondays for 3 weeks.
*Then Nysatin Mondays, Diflucan Thursdays and 2 SF722s on the other days for 2 months.
She didn’t mention diet and I didn’t bring it up. Yippee!

I’m increasing oral progesterone to 100mg/day (I’m at 25mg now), staying at 25mg of oral pregnenolone (uh oh, I just realised while adding this link that I’ve been swallowing my pregnenolone whole, not realising it’s sublingual… grreeaaat 😝) and changing from topical DHEA to 25mg oral.

My sex hormone binding globulin (SHBG) is high, which she said functionally lowers hormone levels. I’m going to start nettle root capsules (work up to 300mg twice a day) to bring SHBG down (not to be confused with nettle leaf, which I drink in tea every day).

I’m not anemic, but my iron is low. She wants me to add Floridix, but after reviewing the ingredients, I may just do a generic ferrous gluconate supplement for 6 months.

For sleep:
*5HTP, 75-150 mg at night (this was recommended by a friend–thank you, M–and Dr. Kim thought it was worth a shot). She says it may even interact with the 5HT4 receptors in my GI tract and help motility. 30-50 mg P5P (active vitamin B6) should be taken with 5HTP.
*Dr. Yasko recommended I get my lithium tested (she answered a quick question on Facebook, I’m not working with her) and Dr. Kim thought I could try supplementing a 20-40 mg per day without a test and see if it helps.
*Belsomra, a prescription sleep medication given to me by my sleep doctor, is still sitting on my shelf a year later and I intend to take a small nibble one of these days. It doesn’t interact with 5HTP, so I can try all the things.

For constipation, I am going to try MotilPro (work up to 3 capsules morning and noon) and a bit of iodine in the form of potassium iodide (5-20 mg 4 times per week).

She said my vitamin D at 40.4 ng/mL is actually fine and I should continue taking 4,000iu/day (I take Thorne liquid D3+K2). She bases this on my calcitriol (vitamin D 1,25) number, which is good at 48.2pg/mL, right in the middle of the range.

She’s not worried about my high cholesterol or LDL at all, so I’m going to shake off my concern about that and trust her.

She said not to worry about an Igenex lyme test or my positive bartonella test for now. She is going to treat my high mycoplasma pneumoniae eventually and she said that treatment is similar to what she’d do for tick-borne infections. I have to say, I kind of like that a reputable LLND isn’t jumping straight into Lyme testing and treatment. She’s definitely not a one-trick pony.

I’ll start antimicrobials for M. pneumoniae, CMV, HHV6 and EBV later this year when my body is stronger. She thinks it will most likely take at least 2 years to get those blood tests into the normal ranges (to the point where my immune system isn’t mounting a response against reactivated infections).

Other supplements* and prescriptions I currently take, many sporadically:

MitoCore
CoQ10/ubiquinol
Humic Acid
Thorne Trace Minerals
Thorne Riboflavin-5-phosphate
Thorne Niacel
Thorne vitamin D3+K2
Thorne B complex #6
Magnesium malate
Magnesium glycinate
Jigsaw magnesium
Potassium gluconate
Biotin
Thiamin
Vitamin A
Vitamin C
Wormwood
HCL + gentian + pepsin
Enzymedica Digest Basic
Enzymedica Digest Spectrum
Charcoal
Levothyroxine (100mcg/day)
Liothyronine (15mcg twice/day)
Prednisone (3mg), Benadryl (25mg), Zantac (10mg), fluids (sodium chloride 0.9%, 1 liter) and Gamunex-C (5g) during infusions.

*By the way, all the supplement links here are for Pure Formulas (and all brands are gluten-free, soy-free and well-regarded). I am not affiliated with them in any way and I can’t get kick-backs if you buy something from these links like lots of bloggers that make money that way (although, maybe I should look into that!). I’ve just done a lot of research and they are consistently the best for me. If you decide to order from them and you want to be a kind and selfless friend, you can use my referral code: RRKMLW or shop here. Once you complete an order (without using any of your own reward points), I get a $10 credit. 😀 I like Pure Formulas because a) free shipping with no minimum; b) 2-day shipping always if you have ShopRunner, which I do through my AmEx; c) you earn cash credits for your orders; d) you can return products you have problems with, even if opened; and e) I have contacted many supplement manufacturers to ask about recommended online retailers (because I’ve read some scary articles about knock-off supplements on Amazon) and almost all of them have told me Pure Formulas is reputable. Last thought: if you comment below with your Pure Formulas referral code I will use one whenever I order (which is often).

My Career in Healthcare.

IMG_20160407_121949-1

My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.